From the President

GAVIN FINKELSTEIN

Gavin Finkelstein is President, Haemophilia Foundation Australia

The last few months have been a busy period for us. 

WORLD HAEMOPHILIA DAY

World Hemophilia Day was celebrated globally on 17 April. Haemophilia Foundation Australia joined World Federation of Hemophilia (WFH) and the international bleeding disorders community to show support for women and girls affected by bleeding disorders. The WFH theme Hear Their Voices enabled many women to share their personal stories on the WFH World Haemophilia Day website, stories of living with a bleeding disorder, and how they addressed their situation when they could not access appropriate information, diagnosis, care and treatment. Other women and girls shared their experiences as carers, partners, mothers, and sisters of a person with a bleeding disorder. HFA launched the next in a suite of education resources in development for women and girls, Finding out you carry the gene, as part of the Hear Their Voices campaign to present the experiences and stories of Australian women and girls who carry the gene.

We also joined the WFH campaign to light up landmarks around the world in red to raise awareness of bleeding disorders on the day. We pulled out all stops and 11 of the 70 global landmarks lit up red were located around Australia – all free of charge in the spirit of creating awareness and recognition. Thanks to our State/Territory Foundations and the individuals who helped with this. We also launched Red Tie Challenge in April to raise awareness of bleeding disorders and this campaign will continue for the whole of April each year.

NEW TREATMENT PRODUCTS

As I write this, there is still no funding pathway to new types of treatment products. 

Several extended half-life factors are registered in Australia and other novel products are on the way. Clinical trial data demonstrates compelling reasons for some people to adopt them for their treatment. Significant improvement in quality of life and productivity is expected – better control of bleeding, better compliance with prophylaxis, reduced infection and thrombotic risk resulting from fewer infusions, less pain, suffering and family disruption, and reduced loss of work and school time. We made a submission to the National Blood Authority stakeholder consultation process about these products in March 2017. The NBA has advised they are currently considering submissions, including those received in April and that they are having further discussions on some matters covered. 

We were able to advocate for best practice treatment and funding for extended half-life factors and other emerging products at an event hosted by the Hon Stuart Robert MP and HFA at Parliament House in Canberra on 31 May. The Hon Dr David Gillespie MP, Assistant Minister for Health, welcomed us to Parliament House and spoke about his experience of treating haemophilia patients in the Haematology Unit when he was a doctor at the Royal Prince Alfred Hospital in Sydney. We were pleased that representatives from all sides of government were present to hear the experiences and stories of community members living with haemophilia describing how important innovation in treatment is to individuals and families living with haemophilia. This was a significant opportunity for HFA to explain the importance of new therapies and how they can improve health outcomes and quality of life.

L-R: The Hon Stuart Robert MP and the Hon Dr David Gillespie MP

L-R: Gavin Finkelstein, HFA President; the Hon Dr David Gillespie MP; Zev Fishman, community speaker for HFA; the Hon Kevin Andrews MP; Dan Credazzi, HFA Vice-President and community speaker for HFA

L-R Dr Simon McRae, Haemophilia Centre Director, Royal Adelaide Hospital, and clinical speaker for HFA; Dr Mike Freelander MP; the Hon Dr David Gillespie MP

CONFERENCE

Don’t forget to start planning for the Australia and New Zealand Conference in Melbourne 12-14 October 2017. HFA will have some limited funding to assist, but we hope you will start putting some funds aside now so that you can be in Melbourne for the conference weekend. The program is looking good, but the friendship and fun is always great when the community gets together!