People with haemochromatosis, their families, scientists, doctors and specialists met in Brisbane for one weekend in August to talk about the past, present and future of haemochromatosis. The 2nd Biennial Australasian Haemochromatosis Conference took place over the weekend of 6th – 7th August at the QIMR Berghofer Medical Research Institute.
After negotiating the crowds of Brisbanites heading to the Ekka across the road, ninety delegates from all states of Australia, New Zealand and even Canada gathered at the state-of-the-art QMIR headquarters on Saturday morning. Our two international keynote speakers headlining the conference were Professor John Crowe from Dublin, Ireland and Professor Pierre Brissot of Rennes, France. The Honourable Mike Ahern AO, chair of the Australian Liver Foundation, officially opened the conference.
The program offered a varied mix of presentations, discussion and question and answer sessions. While there were some specialised sessions for health professionals and scientists, the majority of sessions involved the entire group. This mix of doctor, scientist and ‘patient’ proved fruitful as each group learnt from the other and shared their varied viewpoints. This was evident both during formal sessions and in the discussions and conversations during breaks. Many people commented they felt the conference was unique and highly successful because of this blend of participants from different walks of life.
What did we talk about?
The key theme explored throughout the conference was ‘when should you treat people with the genetic risk of haemochromatosis?’ Which genetic markers? At what level of iron? How is that measured? How effective is treatment for people with varying levels of stored iron?
Our international visitors John Crowe and Pierre Brissot both explored different angles of this question during their keynote presentations. John explored the genetics of haemochromatosis, its prevalence in Ireland and some fascinating recent discoveries about the origins and history of the genetic mutation. Pierre explored the issues of serum ferritin, Hepcidin, transferrin saturation and iron – how they interact within the body and respond to treatment.
Our co-patron Professor Lawrie Powell spoke about the Australian perspective of haemochromatosis.
Professor Martin Delatycki presented early findings from the Mi-Iron research project which was recently conducted in Melbourne, Perth and Brisbane. The study looked at the effectiveness of treatment for people with only mild iron overload. While the full results are yet to be published, the indications are that treatment does provide measurable benefits to those patients.
The conference concluded with a debate moderated by Martin, between John Crowe, Pierre Brissot and Lawrie Powell which summed the discussions throughout the conference.
There was very strong consensus from the experts on the key findings:
- The risk of iron overload occurs primarily and almost exclusively for people with the C282Y homozygous mutations of the HFE gene, with some reduced risk for those with C282Y/H63D compound heterozygote.
- The test result that should be used to determine the need for treatment is the serum ferritin level.
Another first for the conference was the presentation from
Menzies Research Institute researcher Barbara de Graaff on the economic viability of population screening for haemochromatosis. Her research has established that it is cost-effective to screen. She also found that haemochromatosis costs the Australian economy $276M per year. Surely an incentive for government to move on this issue?
We don’t have room to cover the many other speakers and topics. The program was varied with talks on the consumer’s perspective, hepcidin therapeutics, non-HFE forms of haemochromatosis, diet and nutrition, pathology, a GPs perspective, government health policy and much more.
We plan to hold another conference in two years’ time. We will keep our members and supporters informed of plans through our newsletter, website and social media.
We wish to thank the Australian Liver Foundation (www.liver.org.au) for their assistance in bringing Prof John Crowe to Australia and the QIMR Berghofer Medical Research Institute for the wonderful venue for the conference.
Finally, thank you to all the participants at the conference, Your contributions made it a great success.
We are proud to announce two international keynote speakers will headline our conference.
Professor John Crowe
Newman Professor, University College Dublin and Consultant in Gastroenterology and Liver Disease, Mater Private Hospital, Dublin. Professor Crowe is a distinguished gastroenterologist who has had an interest in haemochromatosis and liver disease since 1980. He has published over 200 international papers and presentations. Professor Crowe’s attendance has been made possible by generous sponsorship and support from the Australian Liver Foundation.
Professor Pierre Brissot
Professor of Hepatology, and former head of the French Reference Center for Rare Genetic Iron Overload Diseases, at University Hospital Pontchaillou, Rennes (France). He has acted as visiting professor of medicine at University of California San Francisco and Harvard Medical School (Boston). His research interests include iron and the liver, with special focus on genetic hemochromatosis. He has authored or co-authored more than 300 peer-reviewed publications. He is Past-President of the French Association for Study of Liver Diseases (AFEF) and of the International BioIron Society (IBIS). He received the Marcel Simon award in 2013.
Other Confirmed Speakers
Speakers include many of the leading figures in research, clinical treatment and support of haemochromatosis in Australia.
Haemochromatosis Australia wishes to acknowledge invaluable support for the conference from:
Conference Organising Committee
- Conference convenor: Ben Marris OAM, BA (Soc Work), President, Haemochromatosis Australia
- Project manager: Tony Moorhead