NEWSLETTER

Strategic planning

The aim has been to examine the reasons for our existence and to arrive at a better understanding of where we are going.

You can see that we have already agreed on a mission statement (below), identified five key areas, and developed a brief vision statement for each.

We now expect to develop a strategic planning document that will go into more detail about our visions and the

actions we hope to take over the next few years.

As part of the planning process we will take into account the feedback which some of you provided in the membership survey.

The planning document, expected to be available in the first quarter of 2006, will then form the basis of our activities on your behalf.

Our thanks go to Christina Ryan from ACT Council of Social Services who facilitated our planning meetings.

Fred and Committee

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World Federation of Haemophilia visits Canberra

HFACT was graced with the presence of two dignitaries from the World Federation of Haemophilia in August. The President, Mark Skinner, and the Executive Director, Miklos Fulop, stopped in Canberra on their way to a Haematology conference in Sydney. They were accompanied by Ann Roberts, President, and Sharon Caris, Executive Director of the Haemophilia Foundation Australia.

Miklos Fulop, Mark Skinner and Sharon Caris

This provided an excellent opportunity for the local group and associated medical staff to meet Mark and Miklos and to hear first hand of the issues that face the WFH and the wider community of persons with Haemophilia.

A total of 35 people attended a dinner sponsored by the Haemophilia Foundation Australia

Fred & Maria Wensing with Dr Richard Pembrey and Maj-Gen Phillips (Patron)

A pleasant time was had by all.

New Committee

The annual general meeting of HFACT was held in September and a new committee has been elected, as follows:

   President  :  Fred Wensing
   Vice-Pres  :  Simon McMenamin
   Secretary  :  Lorraine Saunders
   Treasurer  :  Stephen Wells

Joe Guarnieri will be taking some time off soon and thought it best that someone else take up the challenges of the next year.

I would like to take this opportunity to thank Joe and Terri for their enthusiastic involvement with the Foundation in the ACT. I wish them a restful time up North.

Fred

Swim Programme

Here's a picture of Mitchell Wills at the pool - learning to swim with the help of sponsorship from the HFACT.

Membership is due

Please note that membership of the Haemophilia Foundation ACT is open to all persons with haemophilia and their families, as well as professionals involved in the care of persons with haemophilia. A membership form for 2005/06 is included at the end of this newsletter.

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13th National Haemophilia Conference

Integrating Knowledge and Practice

The following reports have been contributed by some of our members who recently attended the 13th National Haemophilia Conference in Melbourne

From Ron Lees

The recent national conference was held at Rydges Hotel in the heart of Melbourne. My impressions were that both the venue and the number of delegates were smaller than the previous two conferences, at the Gold Coast in 2003 and Christchurch in 2001. However, the venue proved suitable for the numbers and both the HFA organisers and the Rydges staff did an excellent job.

The theme of the conference was "Integrating Knowledge and Practice". The theme was evident in the way the sessions were structured, with most sessions including a mixture of theoretical and clinical speakers. For example the first plenary session, which I describe below, began with the technical details of genotypic diagnosis but went on to detail the ethics of genetic testing in practice and the genetic testing available at a clinical level in Australia. This approach made for an interesting conference for both clinicians and patients.

The slides from the conference presentations are now available in Adobe PDF format online at:

Http://www.haemophilia.org.au/Conferences

so I won't go into a lot of detail here. However, some of the more important points, particularly from the plenary sessions are worth mentioning.

The Genetic Basis of Haemophilia

A lot of advances have been made in recent years in the field of using DNA analysis for diagnosis of and genetic counselling for bleeding disorders. This includes both prenatal diagnosis and diagnosis of potential carriers.

Although it has emerged that both haemophilia A and B can be caused by numerous possible defects or mutations on the X chromosome, use of DNA analysis has resulted in diagnostic testing of sufficient value that it is being implemented routinely for haemophilia families in some countries. Canada for example offers genotypic diagnosis to families affected by haemophilia, which enables comparison of undiagnosed patients against known X chromosome defects already present in other family members. For further information about genotypic differences that cause haemophilia A or B, visit the following web sites:

Http://europium.csc.mrc.ac.uk

http://www.kcl.ac.uk/ip/petergreen/ haemBdatabase.html

Having these diagnostic techniques available introduces both choices and dilemmas to prospective parents of children likely to be born with a bleeding disorder. Dr Lynn Gillam from the Royal Children's Hospital in Melbourne presented a very thought provoking summary of the ethical issues of genetic testing. Although genetic testing for haemophilia is not more contentious than testing for other serious congenital disorders, is does have the complication of possibly raising unwanted issues for distant members of an extended family e.g. testing a mother to be for carrier status may be unwelcome for her sister.

Finally we were given an overview of the availability of genetic testing in Australia. As this technology is still very expensive, it needs to be funded somehow and that inevitably involves prioritising the various needs within the community for genetic testing. Before any gene test can be introduced to the clinical setting a cost benefit analysis based on evidence based data must be done in order to receive funding. In the case of haemophilia, an approach of only using one or two laboratories Australia wide has been developed to avoid duplication and to lower costs. However, this has created funding difficulties between the Federal Government and the State health departments that have yet to be resolved.

The Haemophilia Foundation of Australia has a brochure entitled "Inheritance of Hemophilia" produced by the National Hemophilia Foundation (of the USA), which summarises the genetics of haemophilia and the genetic testing techniques presented in this session. Clare Reeves has a copy of the brochure should you wish to read it.

Pain in the Patient with Haemophilia

This was a fascinating plenary session. The three speakers covered

• An overview of what pain is, the role pain has, the types of pain, assessment and management of pain.
• The management of pain in haemophilia, particularly during childhood and adolescence.
• The theory of a new therapy for sufferers of pain called neuroscience education. This was a rather humorous look at pain and pain management based on the content and diagrams from a new book "Explain Pain" by David Butler and Lorimer Moseley (ISBN 0 9750910 0 X). HFA has purchased copies of this book for each local foundation, so ask Clare Reeves if you would like to borrow it.

Hepatitis C Demystified

The third plenary session was an update of hepatitis C (HCV) issues, chaired and partly presented by Associate

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The session covered:

• Findings and recommendations of HIV/HCV co-infection. Although the numbers of patients co-infected are small, they are more likely to progress to liver disease than other HCV patients so it is even more important to consider treating the HCV infection.
• Update of HCV treatments in Australia. Improvements to treatments in the past few years have seen a dramatic increase in success of therapy. New treatments are in the pipeline.
• A description and the outcomes of transjugular liver biopsy, a new method of conducting liver biopsies that is suitable for people with bleeding disorders. The Alfred Hospital in Melbourne is currently the only hospital in Australia using this technique and they are having success with it. As long as the patient receives appropriate prophylactic therapy prior to the procedure they are not having significant bleeding problems. This offers a new dimension to the process of deciding on HCV therapy for patients with a bleeding disorder.
• An outline of the decision making process involved when determining whether to start HCV treatment.
• A personal perspective on living with HCV by Michael O'Reilly. Michael described his life with HCV, the path that took him to the decision to undergo treatment and what the treatment was like for him and the people in his life.

A lot of overhead slides with many technical details were presented during this session, so if you are interested in the detail, I would recommend that you visit the HFA web site.

Ron

From Lorraine Saunders

This was my third HFA Conference and, as usual, it was an extremely worthwhile event. Three sessions I found particularly interesting:

The Genetic Basis of Haemophilia – there is constant progress being made in the area of genetic research and as a mother of a possible carrier 22yo daughter we are always keen to find out how accurate genetic testing is and the level of detail which it can expose. I was amazed to discover that they may be close to identifying whether a specific gene could carry an inhibitor or likelihood. These issues are paramount when considering the prospect of having a family.

Emergency Treatment for Bleeding Disorders – the most touching and informative part of this session was the presentation by a parent – Allyson Hill. Her perspective and advice was inspiring, moving and very funny. I wish I had been able to hear her talk 15 years ago! It would have made a huge difference to the way we handled our visits to the A&E and made our lives easier in many ways.

Family Issues – as usual, it was the informal, networking opportunities which provided the highlight of the conference for me. This session, which had no formal structure, was arranged by a team of healthcare professionals, including a psychiatrist, who convened a group of family members, mothers, sisters etc to discuss issues relating to having children and adolescents with a bleeding disorder. It was an opportunity to connect and share and laugh and cry and be amazed at others' stories and sometimes even your own. Sometimes, you don't realise how far you've come or how much you know.

See you at the next conference!

(A little wiser and a little more optimistic)

A picture of some of the youth at the HFA National conference (Simon McMenamin features at centre-rear).

From Liz Jarvis

The conference ran over 3 days with the days prior to the conference being set aside for different professional groups to meet with their colleagues and discuss common issues. For me this was a great opportunity to match faces with e-mail addresses, and was the first time I had met most of the other Haemophilia nurses. In total, 13 nurses from Australia and 4 from New Zealand attended, which is pretty much it for our region.

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The conference itself provided a good mix of sessions designed to be of interest to people with haemophilia as well as the health professionals caring for them.

One of the emerging health care issues for the haemophilia community is the long-term consequences of living with Hep C and HIV. Many people contracted these diseases 20-25 years ago and are now beginning to display the symptoms of liver damage. One very moving session involved three young men with haemophilia talking about their personal experiences of the transition from childhood to adulthood, including leaving the care of paediatric haemophilia centres, taking responsibility for their own treatment, leaving home, entering the workforce and developing relationships with girlfriends. One man who was Hep C and HIV positive spoke of how he and his wife had managed to conceive 2 healthy children with advice and guidance from their treatment centre.

Playback theatre provided a sensitive and entertaining exploration of stories elicited from the audience. The team of actors asked the audience to describe incidents that had happened to them in relation to haemophilia, and then picking out a theme or emotion they acted out the story.

All in all, the conference was a great chance to meet new people and learn more about hemophilia. The food was great and the shooing was better. I would encourage anyone who can make it next time to attend.

Liz

Damian and Christopher Wensing (Left) and Renee Anderson (Front) enjoying the conference dinner with other attendees.

From Chris Wensing

The Men's Breakfast

The Men's breakfast was my favorite session from the entire conference, the speaker, Rick Hayes, was one of the best speakers I have ever heard. He had a technique that catered to the young and old people in the audience.

The theme of his lecture was of course "men", what it means to be a man, what defines a man, and how these definitions have changed over the years. Rick seemed to be a very worldly man, he had many interesting experiences to share with the group, which fits quite well because nearly everyone in that room had interesting experiences. So not only did he relate well to the audience but the audience also identified with him and the things he spoke about.

It was very interesting how everything he spoke about was relevant to people with haemophilia and yet he only spoke about haemophilia at the very end of the session. He spoke of World War II and how the bonds between men at POW camps is what kept them alive and to an extent, sane. He spoke about the social changes that have taken place over the past 50 years and how that has shaped what a man is today. He spoke about jobs, relationships, money, friends, growing up, hard times and good times.

There was good interaction with the speaker and the audience. Young men and old men all asked questions and took part in discussions. No one felt out of place and no topic was taboo, not that anything controversial was talked about, but you got the feeling you could ask pretty much any question.

Over all, the Men's breakfast was informative and fun. The guest speaker was excellent and enjoyable. My favorite thing about his entire lecture was the fact he never even mentioned haemophilia until right at the end, he just spoke about men in general and the complex beings we so graciously are. Some speakers will overdo the haemophilia factor in their speech, but Mr. Hayes kept it short and sweet when it came to haemophilia and he couldn't have done a better job at entertaining and educating us.

Chris

In Memory - Daniel Rees

It is with great sadness that we announce the passing away of Daniel Rees in September.

Daniel had a long and difficult battle with the viral complications of haemophilia treatment.

He was fondly remembered by family, friends and carers at a memorial service, where tribute was given to his courage, creativity and sense of humour.

We extend our deepest sympathies to his mother, Teresa, and other members of his family.

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Financial Statements 2004/05

The audited financial statements for 2004/05 were presented at the AGM in September. The Income and Expenditure statement is presented (right) for your information. The full set of statements will be posted on the HFACT web site soon.

Quality of life survey results

Some of you may have participated in a quality of life survey conducted by Dr Dipti Talailikar. The findings of this important study will be presented to the haemophilia community at a special meeting on Tuesday 29 November. All who participated will receive an invitation.

Acknowledgment to ACT Health

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