NEWSLETTER

President’s Message

Greetings to all.

HFACT started 2009 with a lovely summer afternoon BBQ at the Cotter. Luckily, the weather was kind to us. We had a great afternoon, enjoying the spoils of the Canberra bush with great company. It was wonderful to catch up with some of our youngest members of the foundation and see them so happy and enjoying life.

This year presents us with a number of important challenges. The haemophilia community in the ACT does not have a haemophilia centre that is staffed 5 days a week. HFACT is working together with the Canberra Hospital towards the common goal of boosting resources for the haematology department.

We look forward to the 15th Australia and New Zealand Haemophilia Conference in Brisbane from October 8 to 11

HFACT members enjoying the summer afternoon
BBQ at the Cotter Reserve.

HFACT is offering funding to individuals affected by bleeding disorders residing in the ACT and surrounding districts who wish to attend the conference. If you are interested in attending, send an email to President@hfact.org.au with your details or contact Clare Reeves (0438 491 213) or myself (0449 266 459).

We will also be continuing to hold regular member social events such as the Men’s Breakfasts or Gatherings, Women’s Wisdom and Mid Winter Dinner later in the year. Keep a lookout for these events on the website and in the newsletter.

Best Wishes

Joe Guarnieri

Mark your diary

15th Australian and New Zealand
Haemophilia Conference
Brisbane

The Sebel, King George Square
Thursday 8 October—Sunday 11 October 2009
For further information contact HFA on 1800 807 173
or visit www.haemophilia.org.au

Vision and Leadership Awards

Included with this newsletter are promotional cards for the HFA Vision and Leadership Awards, an award program to enable men and women affected by haemophilia and related bleeding disorders to achieve new goals.

Please be aware that applications close on 31st March 2009.

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Women’s Wisdom - Luncheon at Jenny’s, 29th November, 2008

It was a lovely sunny day, in late November, a group of women (plenty to fill Jenny’s lounge room), who have haemophilia in common, either as carers and/or carriers. We were expecting to have an informal presentation by Theodara Ahilas, but alas at the last minute she was unable to attend.

Everyone had contributed to the fabulous feast, we chatted as we enjoyed the lovely food (savoury and sweet) about the latest family wedding, and some of our experiences with haemophilia. We discussed what we would like to hear about during the Women’s Wisdom sessions in 2009.

Some of the suggested topics were:

• Hepatitis C and the potential future treatments
• Carrier – Pre-treatment and post operative surgery<
• Genetic testing and counselling – future directions.
• Options for all ages
• Insurance

I would like to thank Jenny for her kind hospitality and for sharing her home for our special get together

Kate McKenzie

WOMEN’S WISDOM

An informal group for women who carry the haemophilia gene and/or are carers of people with haemophilia or other inherited bleeding disorders.

“What’s happening in the World of Haemophilia in 2009!”
(Gourmet goodies, home-grown nurture and global insights)

With Sharon Caris, Executive Officer,
Haemophilia Foundation Australia

Afternoon tea will be served after the informal chat with Sharon. Please bring a small plate.

When: Saturday 28th March, 2009, at 2.00 pm
Where: The home of Kate and Rob McKenzie,
17 Sherwin Place, Melba
When: Saturday 28th March, 2009, at 2.00 pm

RSVP by 22 March 2009:

Kate: katjamck@bigpond.com, 6159 7194 or 0427 792 753
or Clare Reeves, Counsellor at HFACT: 0409 830 472

MEN’S GATHERING

The first meeting of the men’s group for 2009 will be at 2pm on Saturday 18th April at the Regatta Point Café. Come along for camaraderie, to share experiences and to meet other men with bleeding disorders.

RSVP: Joe Guarnieri
6288 5775 or josephg@internode.on.net

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Hepatitis C Re-treatment News

Earlier this year, HFA advocated to the Pharmaceutical Benefits Advisory Committee of the Australian government for access to subsidised re-treatment for those people who have previously had unsuccessful hepatitis C treatment. Some people with bleeding disorders have been able to receive subsidised re-treatment through other schemes or clinical trials, but others have been excluded. It is pleasing that from 1 December 2008, pegylated interferon alfa-2b / ribavirin will be reimbursed on the Pharmaceutical Benefits Scheme (PBS) for re-treating hepatitis C in people who have had unsuccessful treatment

At this stage, one treatment course has been registered in Australia and listed on the PBS for re-treatment. This is a 48

week standard course of PEGATRON (pegylated interferon alfa-2b / ribavirin), based on the results of a very large international study.

If you are considering re-treatment, it is important to consult your hepatitis specialist to discuss whether a course of re-treatment might be suitable for you, what options there are and the likelihood of it being successful, based on your current health and previous experience with treatment.

Suzanne O’Callaghan
Policy Officer at Haemophilia Foundation Australia

Living Well with Hepatitis C and Haemophilia Workshop

Haemophilia Foundation Queensland is conducting an information and support day about Living Well with Hepatitis C and Haemophilia. HFACT has received the following details from them. If you are interested in attending, please contact Clare Reeves in the first instance. There is also a similar workshop being held in Victoria over the weekend of 21st-22nd June.

This event is for those from our community who are:

• Directly affected by hepatitis C
• Currently having treatment for hepatitis C
• Thinking about re-treatment
• Thinking about having treatment for the first time
• And those who have failed re-treatment
• Partners are invited to attend and are more than welcome as well!

This confidential and informal day-long event will be presented by a number of speakers and will cover a range of topics including

• the facts about hepatitis C
• diet
• complimentary medicine
• current treatment options
• trials and new treatments being developed
• dealing with side effects of hepatitis C and treatment
• alcohol
• relationships

Date: Saturday, 4 April 2009
Time: 9.00 am 'til 5.00 pm
Place: The Sebel at King George Square, Brisbane

The day will be fully funded by HFQ through a special funding grant from the Hepatitis Council Qld.

This is a special "no-cost one-off' event which won't be repeated.There is limited funding available for air travel and accommodation for regional participants — you should make early enquiries if you fit into this category.

Please contact Maureen Spilsbury at the Queensland Haemophilia Centre for more information on (07) 3636 8769, or if you are happy to discuss your participation in this event with me at HFQ, my number is (07) 3230 5691.

Please join us for what promises to be an interesting and enlightening day.

Robert Lamberth
Project Coordinator

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Treatment Diaries

Hi Everyone,

Just a quick note to let you know I have received some treatment diaries from a drug company.

They are very nicely presented and have a place to record information about bleeds as well a spot to stick the label from each vial, to keep a record of batch numbers.

They are a handy tool to bring in to the review clinics or doctor’s appointments, or for your own records.

If you would like one, please call in on a Thursday and pick one up, or give me a ring and I can post one out to you.

Liz Jarvis

DATES TO REMEMBER