From the President

GAVIN FINKELSTEIN
Gavin Finkelstein is President, Haemophilia Foundation Australia

WORLD CONGRESS

It is hard to believe that the 2014 World Federation of Hemophilia (WFH) Congress in Australia came and went more than a year ago! Yet, so much of that Congress experience still feels as recent as if it was only last week. It had been a project in progress for several years. HFA staff and volunteers and our State/Territory Haemophilia Foundations along with WFH, Australian government officials, conferencing and events professionals, multidisciplinary health professionals and various suppliers worked together to bring everything together.

There was so much goodwill and a steadfast commitment to support HFA and WFH to achieve a successful Congress. We had a huge team of volunteers in the lead up and during the Congress to make it flow for everyone, to help those who needed treatment during the Congress, and others who made sure people could find their way around the Convention Centre, find sessions or have a good experience of Melbourne. We were indebted to that large team of volunteers who helped in so many ways. Some of our volunteers included former office bearers of HFA Council and State/Territory Foundations who had longed for the day that HFA would host an international Congress and travelled to Melbourne to assist. Others were friends and family of staff and community members, and there were even others who simply offered to help because they had heard about the Congress. After all the “blood, sweat and tears” as they say, it was a very successful Congress.

WFH has moved on to work with our friends from the National Hemophilia Foundation in the United States as the 2016 World Congress in Orlando is now only a year away. But we are left with a wonderful Congress legacy. Even if we put the international perspective aside – or perhaps it is because of this – I can’t help but think the Australian bleeding disorders community and its supporters will remain inspired to improve treatment and care for others where they can and to reach out to support each other for many years to come. The friendship, goodwill and camaraderie between people with bleeding disorders, their family members, their health professionals and others in what we loosely call the “bleeding disorders community” at the Congress was fantastic.

There were 622 Australians at the Melbourne Congress – it had been the chance of a lifetime for many to get to a world class meeting to see and hear presentations and experiences like their own as well as many that were different. Most people living with a bleeding disorder learned something new. So did their relatives and carers. So did their treating health professionals. But sometimes it was the Australians who shared their stories with the global community and found their experiences had resonance for others, or showed areas where we are leading the way.

A GLOBAL COMMUNITY

Almost everyone I spoke to shared the feelings that come with belonging to a community. For some people from overseas and many Australians with bleeding disorders or their family members, this was their first experience of being part of a worldwide community. This was daunting and challenging in many ways for some. So should it be. The feeling of being a part of a global community is important. It is important because we must work together to ensure everyone has the treatment and care they need. Our work will continue.

I raised the question of using surplus plasma proteins from Australian blood collection for humanitarian aid with the Assistant Health Minister, Ms Fiona Nash, in March 2015. This is a very complex issue, but we want to explore whether there are ways any excess plasma components in Australia may be used for manufacture into clotting factors for use as overseas aid. This was achieved after many years of complex interactions in Canada in 2013.

We are also participating in our local region. Sharon Caris, our Executive Director, joined Deon York from HFNZ and WFH staff and volunteers for the WFH Advocacy in Action Workshop in Bangkok in May. This was attended by representatives from approximately 16 countries in the Asia and South East Asia regions.

You will also have heard that for World Haemophilia Day, the AAMI stadium in Melbourne was lit up red to recognise the day.

GOLD COAST CONFERENCE

We have the 17th Australian & New Zealand Conference on Bleeding Disorders coming up in October 2015 on the Gold Coast. The program is taking shape. We will have a couple of speakers from overseas and many locals sharing their experiences and expertise. This is a great conference too. My reason for reflecting on the wonderful camaraderie and connectedness at the international meeting is because I wanted to say that the sense of belonging at our national conference is often even stronger and it is possible to stay more connected than we tend to do with our global friends when we are not together as much.

I want to challenge everyone who made the giant effort to attend the WFH meeting in Melbourne to come to the Gold Coast conference in October as well. See for yourself. You will love it! We have some funding support to assist people to attend so please make sure you take advantage of that.

In this issue of National Haemophilia you will see more about the upcoming Conference and updates on several important issues, including hepatitis C treatments. As you will be aware, PBAC has now approved some of the direct acting antiviral medicines we have been waiting upon, and there are others under consideration. Along with other organisations we are now advocating for urgent government funding so they can be made available to people who need treatment.