NEWSLETTER

Successful dinner meeting

Members and friends of the Haemophilia Foundation were treated to an entertaining and educational evening recently, when those who attended the 27th World Haemophilia Congress, were given an opportunity to share their experiences with us.

The setting for this occasion was the Hotel Kurrajong and the attendance, at just under 40, was probably the most we have had for any function for a long time.

The presentations commenced with Simon’s McMenamin’s experience. His entertaining story is recorded in full on the remaining pages of this newsletter.

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Our next presenter was Dr Phillip Crispin, who was given the unenviable task of presenting Dr Pidcock’s conference slides. Dr Pidcock was unable to attend the dinner meeting due to other commitments.

Dr Phillip Crispin (Haematologist) speaking on behalf of Dr Pidcock

The most interesting item in Dr Pidcock’s (or should I say Dr Crispin’s) presentation concerned the biotechnical advances which may lead to the development of a longer lasting factor VIII. These potential advances hold out hope for many persons with Haemophilia around the world who do not have the benefit of a prophylaxis programme to sustain their factor levels.

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Chris Wensing followed with an overview of the Congress and some of his photos of Vancouver.

Chris Wensing - Presenter

The 27th International Congress was attended by over 4000 delegates from more than 100 countries. Over 900 papers were presented covering the full range of topics relating to Haemophilia, such as factor concentrates, gene therapy, musculoskeletal issues, carriers and prenatal diagnosis, infectious complications, inhibitors, quality of life and many more.

Important messages in the presentation by Chris were:

1. The continued importance of prophylaxis to avoid or reduce the incidence of major bleeding episodes.

2. The importance of exercise in prevention of joint damage through strengthening of muscles and joints

3. Where joint damage has occurred, surgery may provide a suitable remedy for reducing pain and improving the joints.

4. There are significant differences between countries in the quantity and quality of treatment options for Haemophilia.

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The concluding speaker for the evening was Sharon Caris, Executive Office of the Haemophilia Foundation Australia.

Sharon Caris, Speaker and Executive Officer of HFA

Sharon’s main message from the Congress was taken from one of the main papers by Dr Bruce Evatt, from WFH, on the subject of “The natural evolution of haemophilia care: developing and sustaining comprehensive care globally”:

Comprehensive care is vital for patients with haemophilia to prevent early death and free patients from the complications that inhibit living normal lives.

Experience has shown that once introduced in a country, there is a progressive restoration of normal healthy lives to the haemophilia community. Accompanying this progress is a gradual decreased dependency on the haemophilia comprehensive centre – except during brief periods when expertise contained within the comprehensive centre is mandatory for life-saving clinical management or to prevent severe morbidity.

During each stage of the natural evolution of comprehensive haemophilia care in a country, challenges to the existence of the centre occur, which threaten the comprehensive treatment concept.

The haemophilia community must understand this natural evolution and be prepared to work collaboratively with governments, physicians and other patients to ensure that they retain the expertise to meet the emergent needs when they arise.

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Dr Pidcock (Haematologist at TCH) with Chris and Simon at the 27th WFH Congress in Vancouver

Conclusion

A very pleasant evening was had by all. The presentations were informative, the food was good and the atmosphere was conducive for some mixing.

Feedback from the night has been very positive. Let’s do it again some time

Fred (President)

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World Federation Congress as Experienced by Simon

Canada, the home of moose, maple syrup, ice hockey and lumberjacks. Also the home of the 2006 haemophilia world congress.

Vancouver airport

I landed after a 16 hour plane ride and I walked just over a kilometre from my gate to customs. It was a great idea having the world congress where half the attendees will have joint issues, and most likely trouble walking, in a city that has such a big airport. At customs I filled out everything I had to, including the 'carrying human blood products/medication' bit. Every time I have done that on any customs form before, I had to have a baggage check and waste quite a lot of time.

Simon McMenamin talking about his experiences

However I went up to the desk and then the guy who took my form, looked at me and asked "What blood products are you carrying?". I answered with my normal "It's factor 8, I suffer from haemophilia" his first reaction wasn't to look at me ‘sus’ like most customs officers would but instead he said jovially "I had the president of the Mexican Federation come through yesterday! Go on through and have a great time!". Canada was certainly winning me over so far, but I hadn't been outside yet so I was yet to learn that they don’t know what the word Summer is over there.

First day - Wrong seminar

I was told that I was signed in for a pre-conference seminar the day before it started so I headed on down on the Saturday to take part. Turns out that I had either forgotten which day I landed or by some freak chance The 21st was really a Sunday and not a Saturday as I had been lead to believe. Which ever one it was I was told by an incredibly nice woman at the conference centre that the pre-conference sessions were on the Sunday so I had another day to "enjoy Vancouver before I had to work". The next day after finally getting my head around the time difference and finding Chris we eagerly went down to the conference centre that was very nicely situated on Vancouver Harbour, where up to 10 cruise ships can dock at any one time right outside the main door leading into the exhibition hall. We decided that the session best aimed at us was the Psychosocial seminar. And after a few more lovely chats with social workers from all around the world we settled in to the session. They had us play a card game where the rules were different on every table, we constantly had to move around and we

couldn't talk to explain to the new people that the rules were different. There is nothing worse than playing a competitive game against social workers. They were all interested in making everybody happy where as I was interested in getting to the top table and

Ron Coleman with Maj-Gen Peter Phillips (Patron)

DOMINATING!!! Some things don’t work out the way we would want them to. I went down 3 tables, I even lost on purpose on one table to get away from a social worker from Florida who continued to ignore the rules so people wouldn't feel bad, circumventing the entire reason for playing a game where there are definite winners and losers. Regardless of the outcome I learnt one important lesson from the first session of my first international congress, never compete against social workers at anything if you value your sanity.

Maria Wensing and Katherine Wills enjoying the evening

Treatment for all

Treatment for all was the theme of this year’s conference and also the title of the first plenary given by WFH president Mark Skinner. Out of the world wide population of people with haemophilia, which is estimated at 400,000, only 25% receive adequate treatment. On the first day of the conference I realised how good a system we have in Australia. I saw men, the same age as me, who had far more trouble with joints than I ever had. Even though I have had an inhibitor most of my life, when it got really bad I could just go into hospital and get treatment with drugs such as FEIBA and Novo Seven, this is not the case for most of the world. Treatment for all is encompassed in 7 steps:

1. Improving treatment in emerging countries;

2. Ensuring continued development and sustaining treatment where it is already well established;

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Simon’s story (continued)

3. Sharing knowledge and building capacity through information exchange and training;

4. Promoting access to safe and improved treatment and cure-related research;

5. Enhancing access to treatment for VW, rare factor deficiencies and inherited platelet disorders;

6. Expanding and diversifying our financial base;

7. Enhancing and adapting the WFH organisation.

When I first heard this it didn't make all that much sense to me, or it seemed like a rather complex way of putting it. However, Mr Skinner then went on to give a much simpler explanation of the WFH plan by saying "Treatment for all means

1. Proper diagnosis, management, and care by a multidisciplinary team of trained specialists;

2. Safe, effective treatment products are available for all people with inherited bleeding disorders;

3. Expansion of services beyond haemophilia, to those with Von Willebrand’s Disease, rare factor deficiencies and inherited platelet disorders.

Exhibition hall:

After the first session I headed on down to the exhibition hall. I remembered all the cool stuff I had gotten from the various drug companies trying to win me over at the Melbourne conference so I was rather excited to see what the international stage had to offer me. I was not disappointed. The stands were huge and had a wide variety of prizes and games that were informative and fun. I was to become the go-to guy for anyone from Australia wanting to win a prize. The HFA stand was in a rather a prominent position just across from the Novo Nordisk stand. After a week of manning the stand at random times

Fred Wensing (President) with Patti and Alan Luhrs

Clare Reeves (Counsellor) and Linda de Ritter from ACT Health, attending the feedback evening

I memorised the answers to their quiz and they wouldn't let me play anymore because I was taking too much of their free stuff during lunch. I learnt about the wonders of Advate with their 'Vancouver harbour' racing game. I ended up scoring high on that than the guys who built the game and my score of 62,000 still stands to this day.

The entire room was like one big sound chamber and every time a sea plane took off or a cruise ship disembarked the whole place would shake and you couldn't hear a word anybody said. Manning the HFA stand gave me some awesome chances to meet people from all around the world. I spent most of my time on the stand talking with other young people from Ireland to Argentina.

Chris and Simon in Vancouver with their new-found friend Wilmer from Honduras

The most memorable one was a guy called Wilmer from Honduras. Chris and I spent a whole day with him, he didn't speak a word of English. Chris thought this was great because he could practice his Spanish. I could only say 2 things in Spanish and neither of them were very useful in conversation so I just sat and ate my lunch while they had a great chat. Even though I didn't understand a word he said I still enjoyed the idea that no matter where we came from around the world and what language we spoke, we could still relate to each other as sufferers of haemophilia.

Youth

That afternoon was the big one: the national youth council with chairman, Paul Bonner. The first speaker at the seminar was meant to be a guy from Denmark but he couldn't make it for some reason so a man from India talked about the youth program they have in place there. Despite the relative poverty of India compared to Australia, their youth was doing a lot more than we are as an organisation. They are sponsoring people to go to university through donations from different, independent sponsors and every year they sell Christmas cards to raise money for the various activities they undertake through out the year. Paul gave a presentation on the youth leadership and mentoring program we are setting up as a national youth committee. He talked about the leadership weekends we have every other year and the plans we have for further developing the youth committee.

Stephen Wells (Treasurer), absorbing the presentations

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Simon’s story (continued)

After Paul a man called Christian from Denmark spoke about a web forum they have set up in Danish for the youth of that country to connect and share their experience of living with a bleeding disorder or having a sibling with a bleeding disorder. He also took the chance to launch the new website in English www.los-bleedos.net. The site lets young people from all over the globe share life with a bleeding disorder with other young people in the same situation. Life with Haemophilia can get lonely because most of the time we are isolated from the wider haemophilia community. Events like this help to bring us together, but in everyday life there is little to no connection with other people with haemophilia. Such tools as los-bleedos.net help to engage the young haemophilia population in the issues that are prevalent in growing up having a bleeding disorder and it is well positioned to be effective, seeing as most young people nowadays never get off the internet (I know I never do).

Aquarium:

That night there was a cocktail party at the Vancouver Aquarium. 2500 people were going to be jammed into a space that can only take 2000 on a good day. Everyone got dressed up and we headed back down to the conference centre to get the free buses to the event. When I got outside and noticed the line for the buses, or should I say massive pack of people, myself and the youth rep from Victoria, Chantel, jumped a taxi and headed on down. $5.25 later we were there.

Now I've heard it said that people in big cities aren't friendly at all. The week before I went out for dinner and I found myself a nice little pub just down the road from my hotel. I was sitting and watching the Ice Hockey when I started chatting to some random guy next to me. Turns out that he is the head of marketing and sales at Vancouver aquarium. He was the one that booked the function. He gave me his card and told me to call him on Tuesday and he could sneak me through. I called him Tuesday afternoon after my seminars were finished so when we got there Chantel and I went straight through.

Barry Cook and Chris Wensing catching up at the start of the evening

Teresa Fernandez and Stephen Bennet enjoying the evening

It was a great time, amazing nibbles, huge sea animals and a relaxed environment that everyone could enjoy in the middle of a hectic conference.

Conclusion:

The following days were a blur of learning about how other countries run their youth programs, I even sat in on a meeting with the Canadian youth committee they are setting up, new fundraising strategies, hydrotherapy and everything in between.

Everyday was packed full of seminars, symposiums, which were a good option if you didn't want to spend money on lunch, and manning the HFA stand. Every night was full of dinner and drinks with any number of people from Australia, England, Scotland, New Zealand, the good solid drinking countries.

I still marvel at how I made it through the week on such little sleep and so much activity, but somehow I did and my reward at the end of the week was the farewell ball. Held in the main seminar hall it was a prestigious event. Everybody dressed up again and jammed in, ready to relax. There was a piper band that kept walking around for about 20 minutes. Don't get me wrong, I love a good bit of bag pipes, but the motion kinda threw me off. After the pipers there was a big band. Also all the food came in small portions on massive plates so you know it was good. We laughed and danced the night away.

The conference was extreme in that I had to pay attention to so much for so long. I thought once I left school I wouldn't have to study anymore but turns out I was wrong. That said it was also nice to know that even though everybody came from so far away, we were all there for the same reason.

Simon (Vice-President)

Acknowledgment

The Haemophilia Foundation ACT would like to acknowledge that our newsletter has been partly funded through funds provided by ACT Health.