NEWSLETTER

HFACT Membership

Dear members of the foundation,

Last year saw another drop in the number of paid subscriptions to HFACT. The drop in paid membership significantly decreases HFACT's ability to advocate and lobby for better treatment, care and services for people with haemophilia in the ACT. The lobbying power of HFACT is proportional to the number of financial members it has. The number of financial members is a gross underestimation of the actual number of people with haemophilia in the ACT and surrounding districts. An important issue may come up that requires a vote of HFACT paid membership. The cost of HFACT subscriptions has not increased since the foundation was first incorporated in 1993 ($10 family, $5 singles). Have a say in what happens with haemophilia treatment, care and services in the ACT. Please support your haemophilia foundation by paying your subscriptions.

In the past 12 months, in addition to advocating and lobbying for the retention of haemophilia resources at The Canberra Hospital (such as continuation of the nursing service and the haemophilia treatment centre) HFACT has actively worked on:

• Improvements in overall haemophilia care and services in the ACT.

• Access to recombinant treatment products for all people with haemophilia.

• Continuation of the haemophilia counselling service for people with haemophilia in the ACT and surrounding districts.

• Creation of new HFACT resource materials and a website for members and people with haemophilia.

• Re-initiating family camps for people with haemophilia and their families in the ACT and surrounding districts.

• Hosting social events to help develop peer group support for people with haemophilia and their families.

Yours Sincerely,

Joe Guarnieri

President, HFACT

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HFACT Celebrates Turning 21!

In December 2004, HFACT turned 21. The very first informal meeting to form what was to become the Haemophilia Support Group of the ACT took place in December 1983. Over the following two years the informal group became the Haemophilia Support Group of the ACT Inc. A couple of years later the group changed its name to the Haemophilia Foundation of the ACT, in keeping with other Haemophilia Foundations around Australia.

Somehow the fact that we turned 20 in 2003 seems to have passed us by, so instead we will celebrating turning 21 by having a celebratory BBQ/party at the Wensing's house on Sunday 27th February at around 1pm.

Everybody who has been involved with HSG / HFACT over the past 21 years is encouraged to come along. The committee will provide salads, bread and soft drinks, but we ask that you bring your own meat and any alcoholic drinks. If you are coming, please RSVP to Fred or Maria Wensing on 6291 7920 so that we have a clear idea of the numbers of people attending.

The Wensing's address is
7 Brentnall Place, Fadden ACT.

 

Acknowledgement to ACT Health

The Haemophilia Foundation ACT would like to acknowledge that our newsletter has been partly funded through the assistance of a grant from ACT Health.

We thank the department for its ongoing support, without which we would not be able provide many of our services.

Great Mid-winter Dinner

The mid-winter held at Ron and Jenny Lees' house on 21st August was a great success. Despite the freezing conditions, about twenty people attended, including some new families who have only recently become members.

It was good to see them there and welcome them to our community. Our usual bring-a-plate-to-share approach worked well and there was an interesting variety of fare.

Events like these are excellent ways to meet people in the local haemophilia community, share experiences and information and generally have fun.

HFACT Web Site:

 During 2004 there were a lot of changes to the contact details for HFACT. Part of the changes included registration of our own Internet domain name, enabling us to set up our own email addresses and create a small web site.

The web site provides basic information about HFACT including the contact details for HFACT and The Canberra Hospital. This information is useful for visitors to the ACT region requiring treatment or for potential new members wishing to make contact.

The web site also provides access to online versions of recent editions of this newsletter.

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2004 Annual General Meeting

Some of the HFACT Members at the 2004 AGM dinner at the Thai Amarin Restaurant in Kingston

This years AGM was conducted at the Thai Amarin restaurant in Kingston. Almost 20 people attended including a good representation from the Canberra hospital medical team.

The Canberra Hospital Haemophilia Treatment Centre team, from L to R: Ms Clare Reeves(HFACT Counsellor), Dr Michael Pidcock (Senior Specialist, Haematology), Ms Gwen Sampson (Physiotherapist) and Ms Liz Jarvis (Specialist Haemophilia Nurse).

Please consider joining us for our next AGM or any of the social events organised by the committee. There is no pressure to perform any duties and we are a spectacularly wonderful bunch of people.

Cheers from,

Lorraine Saunders

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Haemophilia Family Camp

Narrabeen - the first haemophilia camp I've been to in about 11 years. Although there was a lack of an in-ground trampoline it still competed with the camps of old. The first thing that comes to mind was the food. Damn they feed 'haemophiliacs' well these days! Bacon and eggs for breakfast, fruit all over the place (even on the walls - see below) and everything you could imagine for dinner.

Mitchell pineapples a wall..

On the first day I got a chance to live out my life long dream of shooting arrows like Legolas. Needless to say, I picked up a few bulls eyes, and thanks to one reckless archer, someone almost lost an eye, but that's to be expected. As someone with haemophilia, whenever there is an element of fun, there is an element of danger.

Warning: Archery is an elf hazard

That evening there was a battle of the sexes! It was a lengthy duel with the men shooting ahead, but with the women gradually catching up. It got very loud, and very ugly, and after the dust had settled, it was once again, the men who were victorious!

Sunday morning came too soon, and before I knew it I was in the hot car heading out of the venue. Overall the camp was excellent, it was great to meet other people who have the same things to deal with in life. Everybody was understanding of each other and it was a breath of fresh air to have so many people I've never met, already know what haemophilia is. The only disappointment was that other than the Canberrans, the people closest to my age were either 8 or 38. But I suppose on the flip side to that, the NSW people really appreciated having some young 20 something's to talk to so they could have a glimpse into what their sons would be like at our age.

Foreground - some of the ACT contingent at Narrabeen

It was a great camp, at a great venue with some pretty darn great food! I look forward to the next one and urge everybody to come along.

Chris Wensing

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Conference Reports

Thanks to a grant from ACT Health, HFACT was able to send several people to two worthwhile conferences, both held in Canberra.

Liz Jarvis of the Haemophilia Treatment Centre at The Canberra Hospital kindly volunteered her time to help the organisers of the local conferences by performing ushering and registration desk duties.

4th Australasian Hepatitis C Conference 31 Sept - 2 Oct 04

The conference focus was on "Strategic Directions for an Expanding Epidemic" and covered a wide range of topics including prevention, comprehensive care, and treatment for hepatitis B and C.

The conference coincided with an important announcement that was made following the release of the recommendations of the Senate Inquiry into Hepatitis C and the Blood Supply. This announcement ensured that access to recombinant treatment products would be made available to all people with haemophilia in Australia.

It was great to see haemophilia issues addressed in the conference program. A Haemophilia and Hepatitis C session was held which featured a panel of local and national speakers including representatives of the affected haemophilia community. This session was divided into presentations by the panel members followed by a question and answer session in which the audience could ask questions of the panel of experts. The session was a attended by a significant number of HFACT members who were allowed to attend this session of the conference free of charge.

Other interesting sessions presented at the conference included:

• Health carer attitudes towards individuals with hepatitis C.

• Hepatitis C education of risk groups, health carers and community organisations.

• Reducing hepatitis C anti-viral treatment side effects.

• Treatment outcomes for HIV/Hepatitis C co-infections.

• Hepatitis C virus genotypes and response to anti-viral therapy.

16th Annual Conference of the Australasian Society of HIV Medicine

The conference focus was on "Positive Partnerships - From policy to primary care". The conference concentrated on Basic Science, Clinical Medicine, Social Research, Nursing and Allied Health and Epidemiology. A wide range of subjects were discussed including:

• Early antiretroviral therapy (ART) and treatment interruption in HIV infection.

• HIV prevention using antiretroviral agents.

• Development of Vaccines.

• Care & Support for People Living with HIV/AIDS.

• HIV Drug Side Effects.

• HIV Pathogenesis.

• Epidemiology of new HIV infections.

Please contact me if you would like to read abstracts presented at the either of these conferences.
In addition to the conferences held in Canberra, HFACT was also able to assist in sending Clare Reeves and Liz Jarvis to the 26th Congress of the World Federation of Haemophilia in Thailand.

Although it was our intention to print Clare's conference report, which has an emphasis on psychosocial services, it has already been published in the December 2004 edition of National Haemophilia. So rather than reprinting it here, readers are asked to refer either to that document or visit our web site.*

The following report is from Liz Jarvis and covers the two conferences mentioned above and also the WFH Congress.

Joe Guarnieri

* National Haemophilia is also available online from the HFA web site. Look in the "newsletters and annual reports" section.