National Haemophilia no 190 June 2015

National

Haemophilia

Haemophilia Foundation Australia

www.haemophilia.org.au

REGISTER NOW!

National Haemophilia No. 190, June 2015

No. 19 190 0, June 20 2015 15

1

CONTENTS 2

World Haemophilia Day

14

Girls survey

21

HAW RCD 2015

4

2015 Haemophilia Conference

16

HFA women and girls update

22

Youth update

5

From the President

16

HFSA update

23

Youth news

7

Hep C News

17

Head injuries

24

Calandar

9

World Hepatitis Day

18

MyABDR update

9

HFA has moved

19

MyABDR a persoal view

10

Haemophilia do you catch it

20

AHCDO update

12

Carrying the gene workshop

20

Youth events and mentoring

Haemophilia Foundation Australia Registered No.: A0012245M ABN: 89 443 537 189 7 Dene Avenue Malvern East, Victoria, Australia 3145 Tel: +61 3 9885 7800 Freecall: 1800 807 173 Fax: +61 3 9885 1800 hfaust@haemophilia.org.au www.haemophilia.org.au Editor: Suzanne O’Callaghan

Photographic Usage: Moyan Brenn / William Warby / Charles Williams

AAMI Park, Melbourne

National Haemophilia No. 190, June 2015

WORLD HAEMOPHILIA DAY

2

6.9 million people worldwide have a bleeding disorder. 75 percent of them do not know it.

BUILDING A FAMILY OF SUPPORT Every April 17, World Haemophilia Day is marked worldwide with the goal of increasing awareness of haemophilia and other inherited bleeding disorders. This is a critical effort - with increased awareness comes better diagnosis and access to care for the millions who remain without treatment.

The Prudential Center, Boston, USA

Niagara Falls, Canada/USA

Caption: Miami Tower, Miami, USA

World Haemophilia Day was started in 1989 by the World Federation of Hemophilia (WFH) who chose to bring the community together on April 17 in honour of WFH founder Frank Schnabel’s birthday.

Wrigley Building, Chicago, USA

WFH GLOBAL FAMILY TREE The theme for 2015 was focused on the importance of Building a Family of Support. In line with the theme, there was a unique opportunity to connect with the global bleeding disorder family on the World Federation of Hemophilia Global Family Tree.

WFH developed a colourful interactive web site of a family tree, where people with bleeding disorders from around the world shared their story and photos. This is a fascinating exploration of life with a bleeding disorder around the world.

The WFH Global Family Tree can be viewed at www.worldhemophiliaday.org. Make sure you visit the HFA branch!

National Haemophilia No. 190, June 2015

Together with other landmarks from around the world, AAMI Park in Melbourne turned red on Friday 17 April to celebrate being united in UWRRQTV 1VJGT UKIPKĆ‚ECPV NCPFOCTMU KPENWFGF both the Canadian and United States sides of the Niagara Falls.

3

2015

HAEMOPHILIA CONFERENCE

EARLYBIRD REGISTRATIONS CLOSE 31 JULY

The 17th Australian & New Zealand Conference on Haemophilia and Related Bleeding Disorders will be held at the QT Hotel, Gold Coast 1-3 October 2015.

Planning for the Conference is well under way.

National Haemophilia No. 190, June 2015

Earlybird registration closes 31 July 2015.

4

r 5WRRN[ CPF UCHGV[ QH VTGCVOGPV products, including longer acting clotting factors r )GPGVKEU CPF HCOKN[ RNCPPKPI

WHO SHOULD ATTEND? r 2GQRNG YKVJ JCGOQRJKNKC XQP Willebrand disorder or other bleeding disorders and their families - parents, siblings, partners

For more information and to download a conference brochure visit www.haemophilia.org.au/ conferences.

r ;QWVJ OCVVGTU

If you attended the 2014 World Congress, you will love the Conference in October. If you missed the Congress you will have a chance to catch up. For all stakeholders in the bleeding disorders community it will be a chance to meet up again, renew friendships and learn more about living with bleeding disorders or managing them regardless of your role and interest.

r +ORTQXKPI [QWT LQKPVU

r *GCNVJ RTQHGUUKQPCNU s FQEVQTU nurses, physiotherapists, social workers/counsellors and other health care providers

r 9QOGPoU JGCNVJ CPF DNGGFKPI issues

r 6TGCVOGPV RTQFWEV RTQFWEGTU suppliers and service providers

r 7PFGTUVCPFKPI XQP 9KNNGDTCPF disorder

r 2QNKE[ OCMGTU CPF IQXGTPOGPV QHĆ‚EKCNU

r /CPCIKPI RCKP

r *CGOQRJKNKC HQWPFCVKQP volunteers and staff

MULTIDISCIPLINARY PROGRAM The program has topics and issues to interest everyone including the following and more:

r .KXKPI YGNN YKVJ *+8

r #IGKPI

The program will include people living with bleeding disorders as experts as well as health professionals and others presenting from different perspectives.

r $GUV RTCEVKEG VTGCVOGPV CPF ECTG and how this is measured and monitored

r *GNRKPI EJKNFTGP NKXG YKVJ C bleeding disorder

r *GRCVKVKU % VTGCVOGPV CPF ECTG s including new hep C treatments

r 6JG INQDCN DNGGFKPI FKUQTFGTU picture

COMMUNITY FUNDING HFA has allocated $20,000 to assist community members with expenses to attend the Conference.

Haemophilia Foundations are also providing funding - contact your local foundation for more information.

For details and an application form for HFA funding go to www. haemophilia.org.au/conferences or call HFA on 1800 807 173 for a form to be emailed or posted.

VENUE QT Gold Coast has good access in and around the hotel and on the EQPHGTGPEG ĆƒQQT 6JG EQPHGTGPEG area does not involve long walking distances, and the hotel is suitable for people who use wheelchairs.

Accommodation starts at $190 per night and can be booked online together with your registration.

OTHER FUNCTIONS AND ACTIVITIES ASSOCIATED WITH THE CONFERENCE The annual meetings of specialist health professionalsâ&#x20AC;&#x2122; groups will be held on Thursday 1 October 2015: r #WUVTCNKCP *CGOQRJKNKC %GPVTG Directorsâ&#x20AC;&#x2122; Organisation r #WUVTCNKCP *CGOQRJKNKC Nursesâ&#x20AC;&#x2122; Group r #WUVTCNKC 0GY <GCNCPF Haemophilia Social Workersâ&#x20AC;&#x2122; and Counsellorsâ&#x20AC;&#x2122; Group

r #WUVTCNKCP 0GY <GCNCPF Physiotherapy Haemophilia Group r #$&4 &CVC /CPCIGTU )TQWR Workshops Watch out for more information about special workshops on selected topics that might interest you during the Conference.

Welcome and Exhibition Opening Join us on Thursday evening at the QHĆ&#x201A;EKCN QRGPKPI QH VJG GZJKDKVKQP and welcome to the Conference.

This is complimentary to all registered delegates.

Menâ&#x20AC;&#x2122;s Breakfast & Womenâ&#x20AC;&#x2122;s Breakfast The breakfasts have always been popular and give an opportunity for men and women to meet and UJCTG VJGKT GZRGTKGPEGU s URGCMGTU PQV [GV EQPĆ&#x201A;TOGF DWV VJG[ YKNN DG interesting and relevant!

Youth ;QWVJ CEVKXKVKGU YKNN DG QTICPKUGF throughout the Conference and the program will have sessions of interest to young people integrated throughout the program over the Friday and Saturday. Additional social activities for young people will be organised and we will advise youth YJQ JCXG TGIKUVGTGF QPEG VJG Ć&#x201A;PCN RTQITCO KU EQPĆ&#x201A;TOGF Remembrance Service A Remembrance Service is a very special time during our Conference to remember friends and family, and the people we have cared for in our community, who have died.

The service is non-religious and everyone is welcome. It will be held on Friday 2 October before the Conference Dinner.

Conference Dinner Join us for a relaxing and casual night with other delegates for the dinner on Friday 2 October 2015.

Gavin Finkelstein is President, Haemophilia Foundation Australia

FROM THE PRESIDENT WORLD CONGRESS It is hard to believe that the 2014 World Federation of Hemophilia (WFH) Congress in Australia came and went OQTG VJCP C [GCT CIQ ;GV UQ OWEJ QH VJCV %QPITGUU experience still feels as recent as if it was only last week. +V JCF DGGP C RTQLGEV KP RTQITGUU HQT UGXGTCN [GCTU *(# staff and volunteers and our State/Territory Haemophilia Foundations along with WFH, Australian government QHĆ&#x201A;EKCNU EQPHGTGPEKPI CPF GXGPVU RTQHGUUKQPCNU 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 NGCF WR CPF FWTKPI VJG %QPITGUU VQ OCMG KV Ć&#x192;QY HQT everyone, to help those who needed treatment during the Congress, and others who made sure people

EQWNF Ć&#x201A;PF VJGKT YC[ CTQWPF VJG %QPXGPVKQP %GPVTG Ć&#x201A;PF UGUUKQPU QT JCXG C IQQF GZRGTKGPEG QH /GNDQWTPG We were indebted to that large team of volunteers who helped in so many ways. Some of our volunteers KPENWFGF HQTOGT QHĆ&#x201A;EG DGCTGTU QH *(# %QWPEKN CPF 5VCVG 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 â&#x20AC;&#x153;blood, sweat and tearsâ&#x20AC;? 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

National Haemophilia No. 190, June 2015

Gavin Finkelstein

>> 5

â&#x20AC;&#x153; 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. â&#x20AC;&#x153;

aside - or perhaps it is because of this - I canâ&#x20AC;&#x2122;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 â&#x20AC;&#x153;bleeding disorders communityâ&#x20AC;? at the Congress was fantastic.

National Haemophilia No. 190, June 2015

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.

6

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 FKUQTFGTU QT VJGKT HCOKN[ OGODGTU VJKU YCU VJGKT Ć&#x201A;TUV 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 %CTKU QWT 'ZGEWVKXG &KTGEVQT LQKPGF &GQP ;QTM HTQO 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. ;QW YKNN CNUQ JCXG JGCTF VJCV HQT 9QTNF *CGOQRJKNKC 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 KU C ITGCV EQPHGTGPEG VQQ /[ TGCUQP HQT TGĆ&#x192;GEVKPI QP the wonderful camaraderie and connectedness at the international meeting is because I wanted to say that the sense of belonging at our conference is often even stronger than at the World Congress 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 [QWTUGNH ;QW YKNN NQXG KV 9G JCXG UQOG HWPFKPI UWRRQTV 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.

HEP C NEWS

These new treatments have been described as â&#x20AC;&#x153;game changersâ&#x20AC;?. They are part of the new wave of far more effective hepatitis C treatments that many people with bleeding disorders have been waiting for. +P ENKPKECN VTKCNU VJG[ JCXG JCF XGT[ JKIJ UWEEGUU TCVGU s QXGT HQT OQUV s YKVJ HGY UKFG GHHGEVU CPF UJQTVGT VTGCVOGPV courses. Most will be available in all-oral interferon-free combinations. Some will also be ribavirin-free regimes, which is good news for those who canâ&#x20AC;&#x2122;t tolerate ribavirin.

Some have had encouraging results even with people who previously had unsuccessful treatment or who have advanced liver disease, such as cirrhosis. Most of these treatments are already available in other countries.

PBAC RECOMMENDATIONS To speed up the approval process, the new treatments have been going before the Therapeutic Goods Administration (TGA) to be approved for use in Australia at the same time as the Pharmaceutical $GPGĆ&#x201A;VU #FXKUQT[ %QOOKVVGG 2$#% HQT NKUVKPI QP VJG 2JCTOCEGWVKECN $GPGĆ&#x201A;VU 5EJGOG 2$5 .KUVKPI these new treatments on the PBS would mean they are subsidised by government and would allow Australians to access them at an affordable cost.

In its decision, the PBAC explained that the â&#x20AC;&#x153;new VTGCVOGPVU HQT *%8 YGTG XGT[ GHHGEVKXGq CPF YQWNF QHHGT options for treating people with genotypes 1 to 6.

The PBAC also recommended that the new all oral treatments should be listed in the General Schedule, rather than the Section 100 Highly Specialised Drug Program.

This would mean that prescribing these treatments would no longer be limited to specialist clinics. *QYGXGT ENGCTN[ VJG 2$#% YCU PQV UCVKUĆ&#x201A;GF YKVJ the proposed treatment prices and advised that the Australian Health Minister should negotiate lower prices for them to be cost-effective.

NEXT STEPS â&#x20AC;&#x153;Government funding is needed urgently for these medicines to be listed on the PBS so they are affordable to Australians with hepatitis C,â&#x20AC;? said Gavin Finkelstein, HFA President.

The next step in the process is for the Australian government to consider the PBAC recommendations and make decisions about funding. We hope the cost of these drugs can be negotiated successfully with the pharmaceutical companies without delay. Access to these medicines is critical.

Disappointingly, the Health Minister did not include the new hepatitis C drugs in the pre-Budget announcement of $1.3 billion to subsidise high-cost medicines. However, Several of the new treatments went before the PBAC in the pricing agreements for these hepatitis C drugs March 2015. HFA made a substantial submission to the YQWNF PGGF VQ DG Ć&#x201A;PCNKUGF YKVJ VJG RJCTOCEGWVKECN PBAC including the comments of community members s VJCPMU VQ VJG EQOOWPKV[ OGODGTU YJQ EQORNGVGF VJG companies before they could be listed and this process *(# UWTXG[ QP PGY JGRCVKVKU % VTGCVOGPVU NCUV [GCT ;QWT is no doubt still underway. responses were vital to the HFA submission. p6JG IQQF PGYU KU VJCV VJG /KPKUVGT EQPĆ&#x201A;TOGF VJCV VJG Abbott Government is committed to listing approved We were very pleased that in March 2015 the PBAC recommended that these hepatitis C treatments should be drugs as fast as possible,â&#x20AC;? commented Helen Tyrell, CEO of Hepatitis Australia in a recent press release. â&#x20AC;&#x153;Minister added to the PBS for the treatment of chronic hepatitis C: .G[ OCFG KV ENGCT VJCV QVJGT JKIJ EQUV OGFKEKPGU s YJKEJ YG CUUWOG OGCPU VJG JGRCVKVKU % VJGTCRKGU s CTG PQY r Daclatasvir (DaklinzaÂŽ) in combination with being considered for a government subsidy.â&#x20AC;?

Sofosbuvir (SovaldiÂŽ) r Ledipasvir with sofosbuvir (HarvoniÂŽ) r Sofosbuvir (SovaldiÂŽ)

HFA continues to follow up with further representation to government about access to these treatments.

National Haemophilia No. 190, June 2015

NEW TREATMENTS Access to the new generation direct acting antiviral (DAA) hepatitis C drugs has been at the forefront of HFAâ&#x20AC;&#x2122;s work on hepatitis C this year.

>> 7

â&#x20AC;&#x153; HFA continues to pursue every avenue possible around access to these new treatments for affected members.â&#x20AC;?

IMPACT OF DELAYED TREATMENT It is very important that the current range of new DAAs be made available as quickly as possible to people with hepatitis C, particularly those with long-term infection who are at risk of advanced liver disease.

At the recent European Association for the Study of VJG .KXGT '#5. %QPITGUU KP 8KGPPC C NCTIG 75 UVWF[ EQPĆ&#x201A;TOGF VJG FGVTKOGPVCN GHHGEVU QH FGNC[KPI VTGCVOGPV with the new DAAs until the person has advanced liver FKUGCUG p6JG DGPGĆ&#x201A;VU QH VTGCVOGPV CTG FKOKPKUJGF KH treatment is delayed. If you treat too late it is not going to be as effective,â&#x20AC;? noted the researchers.1 This is particularly relevant in Australia, where access to the new treatments off clinical trial has been limited only to the sickest patients through special access schemes provided by the pharmaceutical companies. Australian hepatitis specialists have been very concerned about the potential impact of delaying access to treatment with DAAs. In a letter to the Medical Journal of Australia they used a modelling approach to demonstrate that if treatment access was delayed by 1 or 2 years, it would result in many new cases of liver cancer, advanced liver disease and liver-related deaths.2

National Haemophilia No. 190, June 2015

People with bleeding disorders and hepatitis C in Australia have been living with hepatitis C infection HQT OQTG VJCP [GCTU PQY s OCP[ HQT OWEJ NQPIGT Treatment to cure their hepatitis C and prevent further liver damage is urgently needed. Many have waited a long time for a treatment that is likely to be successful and they canâ&#x20AC;&#x2122;t wait any longer. HFA continues to pursue every avenue possible around access to these new treatments for affected members.

8

OTHER NEW TREATMENTS Other new DAAs are continuing to work their way through the treatments pipeline. In July 2015 another new combination treatment will go before PBAC for PBS listing: r Paritaprevir with ritonavir, ombitasvir and dasabuvir, with or without ribavirin (Viekira PakÂŽ) s HQT VJG treatment of chronic hepatitis C genotype 1 #V VJG TGEGPV '#5. %QPITGUU TGUGCTEJGTU TGRQTVGF QP the next generation of experimental hepatitis C drugs.

The current range of interferon-free DAA treatment combinations can cure most people with hepatitis C

genotype 1 in 12 weeks. Now researchers are trialling new drugs to work against multiple genotypes (â&#x20AC;&#x2DC;pangenotypicâ&#x20AC;&#x2122;) and that aim to cure patients with shorter treatment courses, eg 6 weeks. However, in the GZRGTKOGPVCN VTGCVOGPVU RTGUGPVGF CV '#5. RGQRNG who had previously had unsuccessful treatment or had cirrhosis still needed longer treatment courses to achieve a cure and the next round of studies are investigating this.3 In comparison to previous studies, which took years to complete, clinicians expect that these clinical trials will produce results much more quickly as the treatment courses are quite short. With the current pace of hepatitis C research, we are likely to see a very different hepatitis C treatment landscape in the next few years.

AND IF YOU HAVE HEP C? In the meantime - if you have hepatitis C and a bleeding disorder, remember that you would need to have your liver health assessed before you could be considered for treatment: r /CMG UWTG [QW JCXG [QWT NKXGT JGCNVJ EJGEMGF TGIWNCTN[ r +H [QW FQPoV MPQY YJGTG VQ UVCTV VCNM VQ [QWT Haemophilia Centre about a referral r 5VC[ KP VQWEJ YKVJ [QWT JGRCVKVKU ENKPKE about whatâ&#x20AC;&#x2122;s new r &QPoV HQTIGV VQ IQ VQ [QWT CRRQKPVOGPV YKVJ VJG hepatitis clinic after your liver health check, even KH VJG Ć&#x201A;DTQUECP UJQYU [QWT NKXGT JGCNVJ KU UVCDNG CV the moment r #PF HQT EQORTGJGPUKXG ECTG NGV [QWT *CGOQRJKNKC Centre know about your liver test results or how your treatment is going to make sure they stay in the loop.

REFERENCES *KIJNG[OCP .K\ '#5. #PQVJGT UVWF[ EQPĆ&#x201A;TOU FGVTKOGPVCN GHHGEVU QH delaying hepatitis C treatment. <www.hivandhepatitis.com, 30 April 2015 tinyurl.com/delaying-treatment> 5KGXGTV 9 4C\CXK * 6JQORUQP # GV CN *%8 KPHGEVGF RCVKGPVU PGGF CEEGUU now to new direct-acting antiviral agents to avert liver-related deaths. Medical Journal of Australia 2015;202(9):479. *KIJNG[OCP .K\ )KNGCF VTKRNG EQODKPCVKQP EWTGU GCU[ VQ VTGCV JGRCVKVKU % patients in 6 weeks, but 4 weeks is not enough. <www.aidsmap.com, 15 May 2015 - tinyurl.com/easl-2015>

WORLD HEPATITIS DAY

WILL BE MARKED GLOBALLY ON 28 JULY 2015.

This year the theme is â&#x20AC;&#x153;Itâ&#x20AC;&#x2122;s time for actionâ&#x20AC;?.

As a Partner in the national World Hepatitis Day Campaign, HFA is working with Hepatitis Australia on the annual national awareness campaign and is committed to making a difference on hepatitis C in Australia.

HFA is working with State/Territory Foundations on making this theme URGEKĆ&#x201A;E VQ RGQRNG YKVJ DNGGFKPI disorders and chronic hepatitis C so you will see more about this in Foundation newsletters, web sites and (CEGDQQM RCIGU s YCVEJ VJKU URCEG Keep your eye on the Love Your Liver web site (www.loveyourliver.com.au) for this yearâ&#x20AC;&#x2122;s activities, as well as tips on liver health.

If you would like to be involved in local events, contact your State or Territory Haemophilia Foundation or your local hepatitis organisation to Ć&#x201A;PF QWV CDQWV VJG CEVKXKVKGU VCMKPI place in your area.

HFA has moved!

After 12 or more years in High Street, Glen Iris, Haemophilia Foundation Australia (HFA) is moving to a â&#x20AC;&#x153;newâ&#x20AC;?

TGPVGF QHĆ&#x201A;EG 9G JCF TGCNN[ ITQYP QWV QH VJG *KIJ 5V QHĆ&#x201A;EG CPF YJGP QWT NCPFNCF[ QH OCP[ [GCTU UQNF VJG DWKNFKPI YG CNUQ FGEKFGF VJG VKOG YCU TKRG VQ OQXG VQ QHĆ&#x201A;EGU VJCV YQWNF DGVVGT OGGV QWT PGGFU 9G JCF VQ VTKO DCEM QWT PGY QHĆ&#x201A;EG YKUJ NKUV DWV CHVGT UQOG EQORTQOKUGU YG JCXG OCPCIGF VQ Ć&#x201A;PF CHHQTFCDNG PGY TGPVCN RTGOKUGU CPF OQXG VQ QWT PGY QHĆ&#x201A;EG KP /CNXGTP 'CUV 9G CTG LWUV QPG UVQR HWTVJGT CNQPI VJG UCOG VTCKP NKPG CU QWT HQTOGT QHĆ&#x201A;EG UQ YG JCXG IQQF RWDNKE VTCPURQTV access, and adequate free car parking for visitors and staff. Our email addresses and phone and fax numbers will remain the same.

New address: &GPG #XGPWG /CNXGTP 'CUV 8KEVQTKC

National Haemophilia No. 190, June 2015

More information is available at www.hepatitisaustralia.com.au.

9

The author of this story is an Australian bleeding disorders community member

HAEMOPHILIA DO YOU CATCH IT? MY PERSONAL STORY I have lived my whole life surrounded by haemophilia.

My father had haemophillia B, due to low levels of factor IX (9). Dad passed away in 1982 after suffering many years of pain, lengthy admission to hospital for months at a VKOG CPF JCF UGXGTG LQKPV FCOCIG FWG VQ TGIWNCT DNGGFU

National Haemophilia No. 190, June 2015

When I was 11 I found out I also had the gene. I had always bled â&#x20AC;&#x153;a little moreâ&#x20AC;? than other girls when I fell over and when I became a young woman, I had very heavy periods but other than that my life was relatively normal.

So I recollect with a smile when I decided to tell my friend CV UEJQQN CDQWV O[ DNGGFKPI FKUQTFGT JGT Ć&#x201A;TUV SWGUVKQP was, â&#x20AC;&#x153;how do you get it - do you catch it?â&#x20AC;? No, you donâ&#x20AC;&#x2122;t catch it; you are born with it, I said. My friend responded quickly with, â&#x20AC;&#x153;Well, I would prefer to have haemophilia then, because you donâ&#x20AC;&#x2122;t look sick at all, but when you catch a cold from someone you feel awful!â&#x20AC;?

10

HAVING A FAMILY When I decided to start a family we had genetic counselling and decided to have chorionic villus UCORNKPI %85 VQ FGVGTOKPG VJG UGZ QH VJG DCD[ Twelve years ago you could determine the sex, but not if the baby had haemophilia. Being an only child myself, if I had a girl or boy not affected by haemophilia, then that was the end of a long era in my family. I must say I was elated when the doctor rang 24 hours later and said that I was having a girl. In 2002 there was still so much unknown about girls having haemophilia, in my OKPF + VJQWIJV s PQ RTQDNGO 9QTUV ECUG UEGPCTKQ UJG YKNN DG LWUV NKMG OGe /[ IQTIGQWU IKTN YCU DQTP via caesarean section, from which I bled and needed a blood transfusion. She had a large cephalhaematoma on her head, which is a blood clot. The doctors told me it was due to the delivery, it was a common occurrence and would take several months to disappear, but after three weeks it was completely gone. I was a little surprised but DGKPI C PGY Ć&#x201A;TUV VKOG OWO CPF UWHHGTKPI VJQUG UNGGRNGUU PKIJVU + LWUV YGPV CDQWV IGVVKPI QP YKVJ NKHG DAUGHTERS AND HAEMOPHILIA We had our daughter tested for haemophillia at the age QH CPF VJG TGUWNVU EQPĆ&#x201A;TOGF VJCV UJG KU C pU[ORVQOCVKE carrierâ&#x20AC;? of haemophilia B. And classed as being mild to moderate with a factor level of 10%.

My daughter is now nearly 12 years old and over the years we have had falls, where she bruises for a few days, and then the bruising is gone. I have had various conversations with her school teachers, dancing instructors, sports teachers, family and friends to explain the condition. From the outside she does not look â&#x20AC;&#x153;differentâ&#x20AC;? to any other child, however when you mention bleeding disorder, their faces change. /[ OQUV KORQTVCPV QDLGEVKXG KU OCMKPI RGQRNG WPFGTUVCPF that she will not bleed to death from a fall or a simple cut and haemophilia does not affect her academic CEJKGXGOGPV YJCV CHHGEVU VJCV KU 68 CPF PQV FQKPI homework!) - and that provided they follow a simple set of guidelines for emergencies, believe it or not all will be OK. School teachers, family and friends now know the best VJKPI VQ FQ KU VQ UVC[ ECNO EQOOGPEG UVCPFCTF Ć&#x201A;TUV CKF treatment, as you would for any other child in regards to a nose bleed or a cut and that for more urgent matters call an ambulance and give them her MedicAlertâ&#x201E;˘ details.

6JG Ć&#x201A;TUV TGCN KPEKFGPV YG JCXG JCF YCU NCUV [GCT YJGP we had a dental appointment at the childrenâ&#x20AC;&#x2122;s hospital and she required a tooth extraction. A simple tooth out CPF VJG YQWPF YCU UVKNN QQ\KPI C NQV GKIJV JQWTU NCVGT UQ we made the trip back to the hospital, where she was admitted and given intravenous BeneFIXâ&#x201E;˘, a recombinant factor IX product, which stopped the bleeding. Everything YCU Ć&#x201A;PG CPF YG YGTG FKUEJCTIGF JQOG VJG HQNNQYKPI day. We now know for future reference that any tooth extraction requires some prior planning and, much to my daughterâ&#x20AC;&#x2122;s delight, a day off school!

I have since discussed with my daughter and our haematologist issues that may arise with her becoming a young woman. She may experience heavier than normal bleeding during menstruation, and may require tranexamic acid tablets each month. We are yet to embark down that road.

MY CHOICES I had a total hysterectomy in 2014 following years of painful, XGT[ JGCX[ RGTKQFU 6JG NCUV Ć&#x201A;XG [GCTU YGTG RCTVKEWNCTN[ bad with intermittent bleeding throughout the month. I EQWNF PQV GPLQ[ UKORNG RNGCUWTGU NKMG UYKOOKPI CPF YCU

*#'/12*+.+# s +557'5 (14 91/'0 #0& )+4.5 r *CGOQRJKNKC KU ECWUGF D[ CP CNVGTCVKQP KP VJG IGPG OCMKPI HCEVQT 8+++ QT +:

r /GP CPF YQOGP ECP JCXG VJG IGPGVKE alteration causing haemophilia and pass it on to their children r /CP[ YQOGP YJQ ECTT[ VJG IGPG FQ PQV JCXG bleeding symptoms r 5QOG YQOGP YJQ ECTT[ VJG IGPG ECP JCXG C bleeding tendency

I have decided to tell you my story and share my experience not because I feel sorry for myself or for my daughter or for having watched my father live with haemophilia, but because for other mothers like me who have daughters there is hope, in fact there is so much hope. I have watched over the last 12 years the changes that have taken place. People, given the right information and informed about our condition, are no longer nervous.

Resources are now available, there have been advances KP OGFKEKPG [QW ECP PQY MPQY CV %85 KH [QWT EJKNF KU C boy or a girl is a haemophiliac or not and education is VJG MG[ pHCEVQTq PQV VJG PWODGT pPKPGq HCEVQT .KHG HQT CNN women with a bleeding disorder, including my daughter, is becoming brighter each day.

FOR THE FUTURE In time, years down the track from now, I will have the discussion about family planning and all that it entails with my daughter. Who knows where we will be by then. $WV HQT PQY + YKNN EQPVKPWG VQ DG COC\GF CV VJG DGCWVKHWN IKTN + CO TCKUKPI YJQ ECP DG FGĆ&#x201A;CPV FQYPTKIJV PCWIJV[ a pleasure to hang out with, someone who lifts my spirits JKIJ CPF LWUV JCRRGPU VQ JCXG JCGOQRJKNKC

r 5[ORVQOU KP YQOGP KPENWFG DTWKUKPI GCUKN[ heavy or long menstrual periods, bleeding for a long time after childbirth, surgery, medical procedures, dental extractions, KPLWTKGU QT CEEKFGPVU r +H C HGOCNGoU HCEVQT NGXGNU HCNN KP VJG TCPIG HQT mild haemophilia (5-40% of normal clotting factor), she may also be referred to as having â&#x20AC;&#x153;mild haemophiliaâ&#x20AC;?. r +P XGT[ TCTG ECUGU UQOG IKTNU QT YQOGP JCXG particularly low factor levels causing them to have moderate or severe haemophilia, and VJG[ OC[ CNUQ JCXG LQKPV QT OWUENG DNGGFU r #NN HGOCNGU YJQ ECTT[ VJG IGPG UJQWNF JCXG testing for their clotting factor levels. Unlike males with haemophilia, where the factor level is the same within the same family, the factor level in females who carry the gene is unpredictable and varies between family members. r 9QOGP CPF IKTNU YKVJ NQYGT HCEVQT NGXGNU should have testing for their factor levels periodically, as their factor levels may change with age, pregnancy and hormonal medications. If their factor level is low, they will need a treatment plan to prevent bleeding problems and manage any situations that occur.

(QT OQTG KPHQTOCVKQP XKUKV VJG *(# YGD UKVG s www.haemophilia.org.au Source: Haemophilia Foundation Australia.

Haemophilia. HFA: Melbourne, 2013.

National Haemophilia No. 190, June 2015

constantly keeping a change of clothes at work in case.

I discussed a hysterectomy with my haematologist and gynaecologist as I was nervous about bleeding during surgery, particularly following the experience after my caesarean. My fears were for nothing. My surgeon ensured that he was well prepared prior to surgery having held discussions with our haematologist and now looking back, + YKUJ + JCF OCFG VJG FGEKUKQP [GCTU CIQ .KHG KU YQPFGTHWN CPF HQT VJG Ć&#x201A;TUV VKOG KP OCP[ [GCTU + ECP YGCT YJKVG

11

Desdemona Chong is the Advanced Clinical Psychologist and Maureen Spilsbury is the Advanced Social Worker Haemophilia at the Queensland Haemophilia Centre

CARRYING THE GENE WORKSHOP Desdemona Chong and Maureen Spilsbury

For Haemophilia Centres and State/Territory Foundations, keeping women who carry the gene up to date with the latest on haemophilia genetics and giving them opportunities to meet and connect with each other is an important part of the education agenda. Information sessions and workshops are a very effective way to achieve this.

The Queensland Haemophilia Centre (the Centre), together with support from the Haemophilia Foundation Queensland (HFQ) and funding from a Changing Possibilities in HaemophiliaÂŽ Grant by NovoNordisk, recently organised a workshop for women who carry the severe haemophilia gene (women carriers).

WHY WE DID IT Because much attention has been placed on men with haemophilia, women carriers often become a neglected group in the haemophilia community.

As a result, their needs may not be well understood and their voices hardly heard. In order to provide a better service to women carriers, the Centre started planning for this workshop in late 2014, with the aim of providing C UCHG CPF EQPĆ&#x201A;FGPVKCN GPXKTQPOGPV YJGTG YQOGP ECP QRGPN[ UJCTG VJGKT unique experiences with one another.

PARTICIPANTS CAME FROM EVERYWHERE! Even with a mighty storm forecast where people are told not to travel unless absolutely necessary, a group of 25 women ranging in ages from their 20s to 70s heroically turned up for the 8-hour workshop on 1 May 2015. The women came from geographically diverse locations starting from Casino in Northern New South Wales all the way up to Cairns in far north Queensland. The strong turnout demonstrates how keen these women who carry the severe haemophilia gene were to come together in such a setting.

WORKSHOP CONTENT 6JG RTQITCO YCU URNKV KPVQ VYQ RCTVU 6JG Ć&#x201A;TUV RCTV YCU KPVGTCEVKXG KP nature. There were small and large group discussions and heart-to-heart sharing of personal experiences by women who were at different stages QH VJGKT LQWTPG[ 6JG UGEQPF RCTV QH VJG FC[ EQPUKUVGF QH RTGUGPVCVKQPU D[ KPXKVGF OGFKECN GZRGTVU CDQWV IGPGVKE EQWPUGNNKPI +8( QRVKQPU CPF haemophilia-related updates.

National Haemophilia No. 190, June 2015

+P VJG Ć&#x201A;TUV RCTV RCTVKEKRCPVU YGTG DTQMGP WR KPVQ ITQWRU CEEQTFKPI to their life stage:

12

+8( #WUVTCNKC IGPGVKE EQWPUGNNQT GZRNCKPKPI +8( VQ YQOGP YJQ ECTT[ VJG IGPG CV C TGEGPV HFNSW information session

In this article, Mona Chong and /CWTGGP 5RKNUDWT[ TGĆ&#x192;GEV QP YJCV was learned and what is planned as the next steps following the workshop for women who carry the gene in Queensland.

1.

Women who do not yet have children

2.

Women who have children with haemophilia

3.

Grandmothers/women of adult children who have seen the evolution of haemophilia treatment over decades (probably the most experienced group).

Participants were asked to discuss questions like, â&#x20AC;&#x153;what are the issues affecting women carriers/extended families/partners?â&#x20AC;? and then to present their answers to the larger group. This enabled participants to share ideas, perspectives and experiences with one another in an informal CPF TGURGEVHWN OCPPGT 6JG Ć&#x201A;TUV RCTV GPFGF YKVJ VJG UJCTKPI QH RGTUQPCN testimonies by four women in the audience about their unique journey with regards to relationships, family planning and raising children.

FEEDBACK Early feedback from participants has been greatly positive. Participants came up to us privately to thank us for the workshop. They generally highlighted the value of being able to connect with other women carriers, being able to hear one anotherâ&#x20AC;&#x2122;s stories and learn from one another. It was also heartening to hear VJCV TGIKQPCN RCTVKEKRCPVU UQOG JCF VQ Ć&#x192;[ UCKF KV was time well-spent.

participant (mother of a young child) pointed out that treatment is getting better and hence, â&#x20AC;&#x153;it can only be more positive in the futureâ&#x20AC;?.

GUIDELINES FOR TESTING Mothers in the group had questions about when their daughters should be tested for carrier status. The recommendations will vary from state to state but it is prudent to raise any concerns with your treating team as they will be in the best position to provide accurate advice.

WHATâ&#x20AC;&#x2122;S NEXT?

Networking among women carriers One of our goals for this workshop was to provide networking opportunities for women carriers to meet other carriers. We hoped this workshop had facilitated MAIN TAKEAWAY POINTS the initial contact. One participant highlighted there Women carriers are under-serviced and their needs are a few Facebook groups which have been launched change as they reach different milestones of their journey. by individuals to help connect parents/women carriers Women carriers probably form the backbone of the CPF RCTVKEKRCPVU YGTG GPEQWTCIGF VQ LQKP KH VJG[ HQWPF EQOOWPKV[ s OCP[ ITQY WR YKVJ JCGOQRJKNKC CPF VCMG QP it helpful. Participants were strongly encouraged to WPQHĆ&#x201A;EKCN JGNRKPI TQNGU KP ECTKPI HQT VJGKT HCOKN[ OGODGT exchange contact details with one another and use appropriate social media avenues to maintain contact. r 9JGP VJG[ IGV KPVQ C TGNCVKQPUJKR VJG[ JCXG VQ educate their naĂŻve partners on â&#x20AC;&#x153;what haemophilia Further collaboration between the Centre and HFQ isâ&#x20AC;? and together, decide on family planning options.

As a big group, participants had the opportunity to Some of these options, as discussed in the workshop, discuss what sort of support/programs they would CTG PQV YKVJQWV FKHĆ&#x201A;EWNVKGU like to have from the Centre and HFQ. Target areas (e.g. support for partners of women carriers) were r #U C OQVJGT VJG[ JCXG VQ CFXQECVG HQT VJGKT EJKNFTGPoU KFGPVKĆ&#x201A;GF CPF UQOG ETGCVKXG KFGCU YGTG CNUQ IGPGTCVGF health needs at school or in medical settings and as through the discussion. Some spoke about the need for some mothers said, â&#x20AC;&#x153;this is emotionally drainingâ&#x20AC;?. emotional support, respite support and even networking opportunities for children to get to know one another. r #U ITCPFOQVJGTU QNFGT YQOGP VJG[ UGG VJG KORCEV QH haemophilia on different generations and again, often Keep the conversation going become an advocate for the family.

Participants were encouraged to approach the psychosocial workers at the Centre or to make contact Women carriers in regional areas do struggle more. with the HFQ proactively, if they had further inputs or Their primary health care professionals may not be ideas. By speaking up and raising their hand, it takes the as familiar with haemophilia and some of the women guesswork out of identifying issues and we will have a reported being confused by the medical advice given. better understanding of their needs.

As such, more resources and support need to be channelled to regional areas.

9G DGNKGXG VJCV VJKU YQTMUJQR KU VJG Ć&#x201A;TUV UVGR KP VJG TKIJV direction in providing a sustainable service to women It is possible for women carriers to have a normal carriers. There is much work to be done and we are family life. Some of the factors pointed out by women optimistic that together with the women carriers who have who said they coped well with having children with spoken, we would be able to develop more meaningful haemophilia were having a supportive partner, living services for this community.

ENQUG VQ VJG VTGCVOGPV EGPVTG JCXKPI Ć&#x192;GZKDNG YQTM JQWTU CPF JCXKPI EQPĆ&#x201A;FGPEG KP VJG VTGCVOGPV VGCO #PQVJGT

National Haemophilia No. 190, June 2015

The second part consisted of presentations by invited medical experts (who also made it to the venue despite the storm!) about genetic counselling, IVF processes/ options and haemophilia-related updates. While largely didactic, participants also had the opportunity to raise questions and clarify issues with the respective speakers.

13

*CPPCJ 1RGUMKP KU *GCNVJ 2TQOQVKQP 1HĆ&#x201A;EGT *CGOQRJKNKC (QWPFCVKQP #WUVTCNKC

GIRLS SURVEY Hannah Opeskin HFA is currently developing new information resources for young women with bleeding disorders. These resources are for young women aged 13-25 years.

As part of the development process, HFA surveyed young women with bleeding disorders aged 13-25 years, parents with daughters aged 13-25 years and health professionals who work with young women with bleeding disorders or carry the bleeding disorder gene and are between these ages. Results from the survey will be used to help guide and develop the resources.

The following are responses from the survey.

YOUNG WOMEN AGED 13-25 YEARS Age group

First place to look for information

How to access education information

Bleeding or carrier status

72.7%

of young women wanted education information to be available in both

print and online

100%

of young women believed that the education resources should contain

National Haemophilia No. 190, June 2015

personal stories

14

Topics with a lack of information ;QWPI YQOGP JCF GZRGTKGPEGF FKHĆ&#x201A;EWNV[ Ć&#x201A;PFKPI KPHQTOCVKQP CDQWV the following: Âť Âť Âť Âť Âť

Females with bleeding disorders Changing factor levels Genetics Bleeding or bruising during sex Symptomatic carriers

Âť Âť Âť Âť Âť Âť Âť

Periods Pregnancy, childbirth and family planning Managing bleeds .KXKPI YKVJ JCGOQRJKNKC Testing Treatment and side effects Costs involved

PARENTS WITH DAUGHTERS AGED 13-25 YEARS

Age group of daughters

First place to look for information

Most important issues for women:

100%

print and online

both

Parents of daughters with bleeding disorders believed that the education resources should contain

videos and checklists

HEALTH PROFESSIONALS Health professionals believed that the important issues for von Willebrand disorder were: » » » » » » » » » » » » » » » » » » » »

Menstruation, gynaecological symptoms and heavy bleeding Knowing how they are affected Diagnosis (understanding and ƂPFKPI C EQTTGEV FKCIPQUKU Inheritance and genetics Relationships Pain Complications to bleeding +TQP FGƂEKGPE[ Pregnancy, childbirth and family planning Obtaining information Disclosure Management .KHGUV[NG KORNKECVKQPU KPENWFKPI sports Sexual intercourse Self-acceptance Treatment and access Financial management The role of the Haemophilia Centre Self-advocacy Operations and surgery

Health professionals believed that the important issues for young women carrying the genetic alteration for haemophilia were: » » » » » » » » » » » » » » » » » »

Inheritance Knowing how they are affected Pregnancy, childbirth and family RNCPPKPI KPENWFKPI CEEGUU VQ +8( Genetic counselling Menstruation Understanding diagnosis Treatment plans Disclosure Understanding low factor levels +TQP FGƂEKGPE[ Relationships Testing Access to support and resources including counselling Information Management of bleeds The role of the Haemophilia Centre Self-advocacy Operations and surgery

How to access education information

69%

of health professionals wanted education information to be available

print and online as well as in both

online with the ability to

download

92%

of health professionals wanted education information to contain

personal stories

National Haemophilia No. 190, June 2015

of parents wanted education information to be available in

15

HFA WOMEN AND GIRLSâ&#x20AC;&#x2122; PROJECT UPDATE WOMENâ&#x20AC;&#x2122;S PROJECT ;QW OC[ JCXG PQVKEGF RGTUQPCN stories from women with bleeding disorders recently in National Haemophilia. Missed them? The stories are also online at www.haemophilia.org.au.

This is part of the work of the HFA 9QOGPoU 2TQLGEV 6JCPMU VQ VJG women who have agreed to be RCTV QH VJG RTQLGEV CPF UJCTG VJGKT experiences or contribute to the new HFA education resources!

The education resources will include two booklets for women, one on carrying the gene for haemophilia and the other on living with a bleeding disorder.

They are well underway and will be available in print and online.

INFORMATION FOR YOUNG WOMEN AND TEENAGE GIRLS We had a great response from young women and teenage girls with bleeding disorders and RCTGPVU s VJCPMU VQ CNN YJQ JCXG EQORNGVGF VJG QPNKPG UWTXG[ ;QW can see the results in this issue of National Haemophilia.

National Haemophilia No. 190, June 2015

Their answers and ideas will be used to develop separate KPHQTOCVKQP TGUQWTEGU URGEKĆ&#x201A;ECNN[ targeted at young women and teenage girls in the 13-25 age group.

16

FOR MORE INFORMATION Womenâ&#x20AC;&#x2122;s project: %QPVCEV 5W\CPPG 1o%CNNCIJCP E: socallaghan@haemophilia.org.au T: 1800 807 173 (Mon-Fri) Young women and teenage girlsâ&#x20AC;&#x2122; project Contact Hannah Opeskin E: hopeskin@haemophilia.org.au T: 1800 807 173 (Tue, Wed, Fri).

HFSA UPDATE %1//70+6; )'6 61)'6*'4 #&'.#+&' 5176* #7564#.+# (4+&#; ,7.; We hope you will be able to attend an informal get together of the South Australian bleeding disorders community on Friday 3 July in Adelaide.

Come along and connect with others, meet some of your health professionals and hear about some important topics affecting the bleeding disorders community.

An invitation by post or email has been sent to everyone with a South Australian address on the HFA database, but if you know of anyone else who may be interested to attend please ask them to contact HFA on 1800 807 173.

OTHER REPRESENTATION South Australians would be aware that HFA wants to create opportunities for people in different parts of the Australian bleeding disorders community to keep in touch with one another and feel connected to the wider EQOOWPKV[ GXGP VJQWIJ YG FQ PQV JCXG CP QHĆ&#x201A;EKCN RCVKGPV QTICPKUCVKQP in South Australia.

The HFA Council tries to make sure a voice from South Australia can be JGCTF GXGP KH PQV QHĆ&#x201A;EKCNN[ CPF C EQOOWPKV[ OGODGT KP CNYC[U KPXKVGF VQ attend Council meetings as an observer. We also receive updates from the SA volunteers who attend the SA Haemophilia Treatment Network. This Network is a South Australian committee which includes health service providers and government representatives. A consumer representative has always been a part of this network and we have been grateful that Paul Bonner and Sharyn Wishart have kept this connection up since HFSA was wound up. HFA also has a good connection with health professionals at each of the Haemophilia Centres in Adelaide.

In the last two years HFA has been able to invite South Australians to participate in national youth activities, the HFA youth website, www.factoredin.org.au, and several young people and adults have been involved in community consultations about initiatives such as MyABDR. HFA provided part or full funding to 12 South Australians to attend the 2014 World Congress.

We hope there will be interest and drive from local South Australians to re-establish HFSA in years to come. We donâ&#x20AC;&#x2122;t want there to be a crisis to prompt this to occur, but we hope a leadership group will emerge in the future. In the meantime, HFA will try to keep connected with people with bleeding disorders, their families, health professionals and other relevant organisations in South Australia in different ways. Please feel free to contact Sharon Caris, Executive Director or other HFA staff if you have any concerns about local issues that you think HFA could help with.

GOLD COAST CONFERENCE FUNDING As we did not need to use former HFSA savings for any of the 2014 World Congress expenses there is potential to provide some additional support to South Australians to attend the 2015 Haemophilia Conference on the Gold Coast in October in addition to the general funding we are making available.

If you are keen to attend the Conference please complete the funding application form before the due date - for details and an application form go to www.haemophilia.org.au/conferences or call HFA on 1800 807 173 for a form to be emailed or posted.

Andrew Atkins is Haemophilia Clinical Practice Consultant, Royal Adelaide Hospital

HEAD INJURIES Andrew Atkins

9JKNG VJG UKIPU U[ORVQOU QH DNGGFKPI KPVQ LQKPVU CPF muscles are emphasised often, and may become obvious due to repeated experiences, the warning signs of internal head (intracranial) bleeding can be more general, and depending on circumstances, not immediately taken as a potentially serious sign.

Intracranial bleeding could be described as the most dangerous of bleeds, as it can quickly lead to permanent EQIPKVKXG CPF RJ[UKECN FGĆ&#x201A;EKVU QT FGCVJ WARNING SIGNS Some of the warning signs of intracranial bleeding include: r RGTUKUVKPI JGCFCEJG QH GKVJGT C UWFFGP QT ITCFWCN onset r VKTGFPGUU CPF FGETGCUGF CNGTVPGUU r XKUWCN EJCPIGU r FKHĆ&#x201A;EWNV[ KP VJKPMKPI URGCMKPI ENGCTN[ r NQUU QH EQQTFKPCVKQP If any of these symptoms occur following a blow to the head then medical attention should be sought without delay, however minor the blow may have apparently felt.

If any blow to the head makes you â&#x20AC;&#x2DC;see starsâ&#x20AC;&#x2122; or fall down, or make you want to sit down, or if it caused you to lose consciousness, then present to an Emergency Department as soon as possible. If you are at home and have factor accessible, then self-administer a dose before going to the Emergency Department.

INDIVIDUAL EXPERIENCES In some instances the only symptom felt may be a persistent headache with no recall of a blow to the head. At our adult Haemophilia Treatment Centre over the past several years there have been four occurrences of intracranial bleeding. One of these was a man with

type 2 von Willebrand Disease who fell from a ladder, and was retrieved by ambulance to the Emergency Department. Another man with severe haemophilia A on prophylaxis suffered an intracranial bleed without CP CRRCTGPV JGCF KPLWT[ 6JG VYQ QVJGT QEEWTTGPEGU were men with mild haemophilia who both did not recall a blow to the head at the time of admission and diagnosis (although one later recalled a minor blow).

While all three men with haemophilia sought attention for their persistent headache, the delay for each of them between onset of symptoms and presentation resulted KP OQTG UKIPKĆ&#x201A;ECPV DNGGFKPI GHHGEVU CPF TGJCDKNKVCVKQP In contrast, another South Australian man, who has moderate haemophilia A, was bashed numerous times to the head and face and robbed of his wallet while in Bali in April. He was able to return to his hotel room, where he was found in a pool of blood some hours later by hotel staff. He was airlifted in an induced coma to Royal Perth Hospital where he spent three days in intensive care. #OC\KPIN[ FGURKVG JKU KPLWTKGU KPENWFKPI HCEKCN HTCEVWTGU He suffered no intracranial haemorrhage. He is now back in Adelaide and recovering well. His advice to others travelling overseas is to ensure they have travel insurance, CPF YGCT C OGFKECN CNGTV DTCEGNGV s JG FKFPoV CPF JKU ECTF was stolen along with his wallet, meaning the hospital in Bali did not know of his haemophilia until his relatives were contacted in Australia.

5Q VJG EQTTGNCVKQP DGVYGGP UGXGTKV[ QH KPLWT[ CPF KPVGTPCN DNGGFKPI ECP DG RQQT s YJKNG JGCX[ DNQYU OC[ PQV ECWUG a bleed, donâ&#x20AC;&#x2122;t assume that a small blow wonâ&#x20AC;&#x2122;t. While itâ&#x20AC;&#x2122;s always inconvenient to interrupt oneâ&#x20AC;&#x2122;s plans and attend the Emergency Department, suspected cases are triaged as high priority, meaning waiting times are short. And those who have attended the Emergency Department and received the â&#x20AC;&#x2DC;all-clearâ&#x20AC;&#x2122; regard the inconvenience as a small price for the peace of mind.

OTHER RISK FACTORS #U C Ć&#x201A;PCN RQKPV JCGOQRJKNKC CPF JGCF KPLWTKGU CTG PQV VJG QPN[ TKUM HCEVQTU HQT KPVTCETCPKCN DNGGFKPI s QVJGT MPQYP risk factors include high blood pressure and liver disease.

In fact, two of the haemophilia patients mentioned above did have liver disease which most likely contributed to their intracranial bleeding. So see your local GP and have your blood pressure checked, and for those living with hepatitis, it is worthwhile seeing your liver specialist if you have not done so recently.

National Haemophilia No. 190, June 2015

The availability of clotting factor in Australia has led to greater opportunities in pursuing lifestyle and occupational activities. But while the risk of bleeding is reduced with prophylaxis or â&#x20AC;&#x2DC;pre-activityâ&#x20AC;&#x2122; doses, it is still possible to have a bleed while â&#x20AC;&#x2DC;coveredâ&#x20AC;&#x2122; with factor.

17

MYABDR UPDATE From the HFA and National Blood Authority MyABDR Team WHATâ&#x20AC;&#x2122;S NEW? The latest release of MyABDR in January 2015 brought you more improvements and features: r (CUVGT U[PEJTQPKUCVKQP r $WI Ć&#x201A;ZGU VQ JGNR WUGTU DGVVGT OCPCIG VJGKT KPXGPVQT[ levels and copy forward routine prophylaxis treatments â&#x20AC;&#x153;Since the last update I have found MyABDR easier to use â&#x20AC;&#x201C; with better inventory control and speed to load and update treatments. I think every update has been creating a better â&#x20AC;&#x201C; and great - tool for people to use. In my family it has become a key part of our haemophilia treatment and management.â&#x20AC;?

NEED HELP? Donâ&#x20AC;&#x2122;t forget your friendly MyABDR Support Team is available 24 hours a day, 7 days a week to help you with any problems.

Finding it hard to make the time to ring? The team is available at any time, even outside business hours, or send them an email and they will ring you back at a time that suits you.

6 $.11&

E: myabdr@blood.gov.au For more information on MyABDR, visit www.haemophilia.org.au/myabdr.

David, MyABDR User, Tasmania ;QW OC[ CNUQ JCXG PQVKEGF VJG PGY #$&4 /[#$&4 Privacy Consent form that you will probably have completed by now.

National Haemophilia No. 190, June 2015

;QWT HTKGPFN[ /[#$&4 5WRRQTV 6GCO NGHV VQ TKIJV 8CWIJCP 2GVTC #PFTGY 4GDGEEC ,Q .CEJNCP .[PFUC[ CPF 0CVJCP

18

Neil is a community member from South Australia

MYABDR â&#x20AC;&#x201C; A PERSONAL VIEW Neil from SA + YGNEQOGF VJG CFXGPV QH /;#$&4 YKVJ UQOG excitement and attended a users meeting in Adelaide prior to its rollout. + JCXG UKPEG HQWPF KV GCU[ VQ WUG s KPRWVVKPI VJG information online takes less than 10 minutes.

FAVOURITE FEATURES I use the web site version of MyABDR. I particularly love the reports - the ability to be able to look back on past treatments, when they occurred and their frequency. The pie chart that comes up is very good.

I also really like the body image that comes up when you YCPV VQ RKPRQKPV C DNGGF +V KU UQ GCU[ VQ FGĆ&#x201A;PG YJGTG the bleed is; then when you click on it, all the options EQOG WR VQ JGNR [QW TGĆ&#x201A;PG KV 6JG FTQR FQYPU CPF VJG automation work well. #PQVJGT HGCVWTG + Ć&#x201A;PF JCPF[ KU VQ JCXG VJG VTGCVOGPV RNCP available. It gives me peace of mind knowing that if I do have a larger than usual dose for a severe or traumatic bleed, this is what has been agreed on with my Haemophilia Centre.

MyABDR also enables me to record factor received without FKHĆ&#x201A;EWNV[ 9JGP + DTKPI JQOG O[ PGY UVQEMU QH HCEVQT 8+++ I can record my stocks and then put the vials in the fridge.

Thatâ&#x20AC;&#x2122;s how easy it is. The product doesnâ&#x20AC;&#x2122;t have to sit out of the fridge for a long time while I work out how to record it, because the system is so easy and quick to use.

While being of great value to me in recording my history of bleeding episodes and the sites of those bleeds, it is also provides the Treatment Centre and relevant government agencies with the type of data required to provide people with bleeding disorders improved treatment and care. With these statistics in front of them they are more informed about the importance of these products to people with haemophilia and other bleeding disorders.

It is at the â&#x20AC;&#x2DC;end of the chainâ&#x20AC;&#x2122; that, in my opinion, the real XCNWG QH /;#$&4 GZKUVU HQT RGQRNG YKVJ DNGGFKPI FKUQTFGTU and for this reason the more it is used the better.

I would like to take this opportunity to thank all involved in the development and on-going maintenance of /;#$&4 CPF UVTQPIN[ TGEQOOGPF KV VQ CNN RGQRNG YKVJ bleeding disorders. /;#$&4 RTQXKFGU WU YKVJ VJG QRRQTVWPKV[ VQ KPĆ&#x192;WGPEG our level of treatment and the availability of improved factor.

National Haemophilia No. 190, June 2015

THE VALUE OF MYABDR The information recorded provides all stakeholders s OG VJG *6% GXGT[QPG KPXQNXGF KP VJG VTGCVOGPV QH haemophilia - with data in various formats indicating amongst other things, frequency of bleeding episodes, bleeding sites and usage of factor over various periods.

19

#PP 9KNUQP KU VJG #$&4 2TQLGEV 1HĆ&#x201A;EGT

AHCDO UPDATE Ann Wilson ABDR RESEARCH Although bleeding disorders and their treatment have been widely studied, little has been published from data collected about people with bleeding disorders in Australia.

The ABDR (Australian Bleeding Disorders Registry) is an online database designed to collect all medical and health information about the normal, routine and emergency treatment of all people with bleeding disorders nationwide. As such, it offers the unique opportunity to study bleeding disorders in Australia. ;QW OC[ TGECNN EQORNGVKPI CP #$&4 RTKXCE[ EQPUGPV form recently. Along with ethics committee approval from your hospital, these are important steps for AHCDO (Australian Haemophilia Centre Directorsâ&#x20AC;&#x2122; Organisation) to begin studying ABDR data. With patient consent and GVJKEU CRRTQXCN s CPF HQNNQYKPI VJG UVTKEV TWNGU QH RCVKGPV data access for the ABDR - members of AHCDO will now

explore the data to better understand bleeding disorders CPF JQY VJG[ CTG VTGCVGF CPF VQ Ć&#x201A;PF YC[U VQ KORTQXG patient wellbeing and health outcomes. In this study, the FCVC YKNN DG FG KFGPVKĆ&#x201A;GF UQ PQ RCVKGPV ECP DG KFGPVKĆ&#x201A;GF and analysed to answer questions such as: 1. What types of people are affected by bleeding disorders?

2. What is the national rate of bleeding disorders?

3. What is the most effective treatment for certain types of bleeding disorders?

4. What are the risks factors to developing inhibitors to treatment?

Through this research we hope to improve the wellbeing and health care of people with bleeding disorders.

National Haemophilia No. 190, June 2015

YOUTH EVENTS AND MENTORING

20

â&#x20AC;&#x153;Iâ&#x20AC;&#x2122;ve rarely seen someone with haemophilia who was older and had more experience than me. Seeing what life would be like in a few years â&#x20AC;&#x201C; it makes it a lot less scary.â&#x20AC;?

issues relating to transitioning from being a child to adulthood, for example, through a youth camp. HFA is looking at ways to achieve this.

Jacob, 14, who has haemophilia

;QWPI RGQRNG YKVJ DNGGFKPI FKUQTFGTU JCXG QHVGP OGV each other when they were small children at haemophilia foundation Family Camps, but lose contact as they reach their teenage years and stop going to camps.

It is ironic that growing up with a bleeding disorder today can be more isolating than in previous generations. With prophylaxis and improved treatments, children with bleeding disorders no longer have to go through the misery of constant emergency visits and long hospital stays. But at the same time, this means they have fewer natural opportunities to connect with each other or talk to older boys or girls about what happens next.

This issue became prominent in Beyond Prophylaxis, the *(# ;QWVJ 0GGFU #UUGUUOGPV #P KORQTVCPV QWVEQOG QH Beyond Prophylaxis was the HFA youth leadership and mentoring training. The training aimed to upskill youth leaders in mentoring skills and work on opportunities for them to â&#x20AC;&#x153;catch upâ&#x20AC;? with and mentor younger people with bleeding disorders.

The HFWA youth event reported in Youth News is an example of how this can work on a small local scale.

Ideally these events could be larger and cover more

Hamish, who is now 23 years old, is a keen participant in HFAâ&#x20AC;&#x2122;s youth leadership and mentoring program. Hamish spent months at a time in hospital receiving treatment, missing out on school and his chance to form friendships YKVJ EJKNFTGP DCEM JQOG .KXKPI KP C TWTCN EQOOWPKV[ Hamish knew no one else with a similar condition, so the group of young people he met through attending the Family Camps became his closest friends.

Hamish is an enthusiastic mentor to younger children with haemophilia, and is pleased to do all he can to support them. â&#x20AC;&#x153;As a younger kid I was always needle phobic. When I learnt how to do it, I was asked by the haemophilia nurse if I wanted to show the younger kids how itâ&#x20AC;&#x2122;s done. Two or three of us have now been doing that for

the last 10 years. All theyâ&#x20AC;&#x2122;ve got to do is learn to put it in themselves â&#x20AC;&#x201C; then they can do whatever they want.

Theyâ&#x20AC;&#x2122;re free.â&#x20AC;?

with him and learn from him, to see what the future looks like. And he told me ways that I could connect with others, which I really need.â&#x20AC;?

Jacob is 14 years old and no longer attends Family Camps, but misses the sense that he is not the only one with haemophilia. Jacob and Hamish met at several Family Camps over the years, and reconnected at Red Cake Day in 2014. For Jacob, their friendship has meant a rare opportunity to see what the future looks like for a young man with haemophilia.

Face-to-face activities that bring young people of various ages together are a valuable environment to foster OGPVQTKPI CPF EQPPGEVKQP DGVYGGP [QWPI RGQRNG .QECN pECVEJ WRUq [QWVJ ECORU QT YGGMGPFU s CPF ECVEJKPI WR CV GXGPVU UWEJ CU VJG *CGOQRJKNKC %QPHGTGPEG s CTG CNN important opportunities to help young people develop independence and resilience through peer support. HFA and local foundations are continuing to work on ways to provide these opportunities and underpin them with youth leadership training.

â&#x20AC;&#x153;The unique thing was meeting someone older than me with haemophilia. It was really interesting to talk Hamish and Jacob at Red Cake Day

Red Cake Day Haemophilia Awareness Week 11-17 October 2015

HFA is calling on our friends and supporters to help us celebrate Haemophilia Awareness Week by taking part in Red Cake Day! +VoU GCU[eCNN [QW JCXG VQ FQ KU DCMG UQOG FGNKEKQWU TGF cakes or cupcakes, decorate them, and share them with your friends or work colleagues in exchange for a donation or a gold coin. ;QW EQWNF VCMG VJGO VQ YQTM UEJQQN JCXG C ECMG UVCNN or simply host an afternoon tea with your nearest and dearest family and friends. Not only will you be having a delicious morning tea but youâ&#x20AC;&#x2122;ll be helping raise funds

and spread the word about haemophilia and other inherited bleeding disorders!

Then, simply send the donations to Haemophilia Foundation Australia. All funds raised will go to a range of programs and services run around the country.

FOR MORE INFORMATION The promotional items ordering system will be online at the end of July. To receive an alert when this is open, email your details to Natashia ncoco@haemophilia.org.au.

For more information on Haemophilia Awareness Week and Red Cake Day: r XKUKV YYY JCGOQRJKNKC QTI CW TGFECMGFC[ r QT ECNN *(# QP r QT GOCKN 0CVCUJKC PEQEQ"JCGOQRJKNKC QTI CW .KMG 4GF %CMG &C[ QP (CEGDQQM YYY HCEGDQQM EQO RedCakeDay

National Haemophilia No. 190, June 2015

Haemophilia Awareness Week is an opportunity for individuals and families as well as Haemophilia Foundations and other organisations to take part in a campaign and activities to raise awareness about haemophilia, von Willebrand disorder and related inherited bleeding disorders throughout Australia during the week of 11-17 October 2015.

21

*CPPCJ 1RGUMKP KU *GCNVJ 2TQOQVKQP 1HĆ&#x201A;EGT *CGOQRJKNKC (QWPFCVKQP #WUVTCNKC

YOUTH UPDATE Hannah Opeskin FACTORED IN YOUTH MODERATORS Since the moderation training in February, youth moderators have been busy promoting Factoredin.org.au across their State and Territory Foundations and continue to be involved in moderation, with the moderators adhering to an initial 6 month roster s OQFGTCVQTU GCEJ OQPVJ EJGEMKPI VJG UKVG 6JG[ CTG also contributing to the ongoing development of the web site. Head to www.factoredin.org.au and have a look at some of the new articles and comments to see YJCV QWT COC\KPI OQFGTCVQTU JCXG DGGP YQTMKPI QP FACTORED IN UPGRADE The work to upgrade Factored In is continuing.

It is currently at the stage where HFA has assessed YJCV PGGFU VQ DG FQPG Ć&#x201A;TUV CPF JCU PQY UQWTEGF quotes from designers. The upgrade with include a menu and homepage restructure to increase the siteâ&#x20AC;&#x2122;s appeal and ease of use. The requirements for the upgrade requirements are based on feedback from the Factored In survey and further ideas workshopped by the youth moderators.

National Haemophilia No. 190, June 2015

;QWVJ FGNGICVGU CV %QPITGUU Photo: WFH

22

HAEMOPHILIA CONFERENCE The Australian and New Zealand Haemophilia Conference will be held this year in October, in Queensland. There will DG C [QWVJ URGEKĆ&#x201A;E UGUUKQP TWP D[ UQOG [QWPI RGQRNG KP the bleeding disorders community, so make sure you come to support them!

We asked young people what kind of youth activities they would like. They asked for a social activity or two which might involve a youth meeting place at the Conference and a social lunch or dinner, so we are working on this as the plan for this yearâ&#x20AC;&#x2122;s Conference.

Make sure you contact your State or Territory Foundation to see out what funding options are available. /CP[ [QWVJ UCKF VJG[ JCF CP COC\KPI VKOG CV %QPITGUU and loved meeting and catching up with other young people from across Australia and New Zealand.

I canâ&#x20AC;&#x2122;t wait to see everyone there!

YOUTH CATCHING UP IN WA HFWA YOUTH EVENT *(9# TGEGPVN[ JGNF CP GXGPV QP /CTEJ CV 2GTT[ .CMGU HQT [QWPI RGQRNG CIGF [GCTU along with youth mentor Dale. The event was a Simulator Circuit race and proved to be great fun among all who attended!

Reprinted with permission from Contact, the newsletter of HFWA (www.hfwa.org), March 2015

The youth event was Simulator Circuit racing. We had a competition consisting of several rounds and a knock out. The racing was exciting, thrilling, and challenging. We were driving .CODQTIJKPKU

Being together with ever yone else was awesome as well, as we had not seen each other a while - camp was a long time ago. *(9# RTQXKFGF C UCWUCIG UK\\NG lunch for all the teens and even a kookaburra got a feed when it swooped down and grabbed a sausage for itself.

The next youth event will be Gladiators and I am really looking forward to it.

FROM: Justin

The youth event was gr eat. t We had a racing simulator knock out competition - the kids loved it - and YG Ć&#x201A;PKUJGF WR YKVJ C $$ 3

FROM: Dale (youth m en

tor) Justin and Dale at the youth event Photo: HFWA

National Haemophilia No. 190, June 2015

On March 7 2015, HFWA held a youth event. This youth event is VJG Ć&#x201A;TUV + JCXG DGGP VQ CU + JCXG LWUV VWTPGF +oO JCRR[ VJCV + ECP Ć&#x201A;PCNN[ EQOG VQ VJG [QWVJ events now.

23

CALENDAR 17th Australian & New Zealand Conference on haemophilia & related bleeding disorders 1-3 October 2015 Gold Coast Tel 03 9885 7800 Fax 03 9885 1800 Email hfaust@haemophilia.org.au www.haemophilia.org.au/conferences Haemophilia Awareness Week 11-17 October 2015 Tel 03 9885 7800 Fax 03 9885 1800 Email hfaust@haemophilia.org.au www.haemophilia.org.au World Haemophilia Day 17 April 2016 www.wfh.org/whd

CORPORATE PARTNERS Haemophilia Foundation Australia (HFA) values the individuals, philanthropic trusts and corporations which have made donations to education activities and peer support programs and Corporate Partners that sponsor programs to enable HFA to meet its QDLGEVKXGU QH r CFXQECE[ CPF TGRTGUGPVCVKQP that improves access to treatment and care for people with bleeding disorders r GFWECVKQP CPF RGGT UWRRQTV activities that increase independence and the quality of lives of people with bleeding disorders, and their families r GPEQWTCIKPI ENKPKECN excellence in haemophilia care, and promoting research.

HFA NATIONAL COMMUNITY SURVEY Answer the survey to be in the draw to win great prizes!

HFA needs your feedback on our programs and services. .GV WU MPQY JQY YG ECP DGUV RTQXKFG UGTXKEGU CPF DG relevant to you and the bleeding disorders community now and in the future! ;QW ECP Ć&#x201A;PF C EQR[ QH VJG UWTXG[ KP VJKU KUUWG QH 0CVKQPCN Haemophilia and online on the HFA web site www.haemophilia.org.au.

This is your opportunity to have your say! Just 10-15 minutes of your time.

So donâ&#x20AC;&#x2122;t forget to complete the survey by Friday 31 July 2015. #PF GPVGT VJG RTK\G FTCY VQ YKP First prize - $200 gift voucher (valid Australia-wide) Second prize - $100 gift voucher (valid Australia-wide The prize entries will be drawn on Friday 7 August 2015 â&#x20AC;&#x201C; results published on the HFA web site.

0#6+10#. *#'/12*+.+# KU C RWDNKECVKQP QH *CGOQRJKNKC (QWPFCVKQP #WUVTCNKC 'XGT[ GHHQTV KU VCMGP VQ GPUWTG CEEWTCVG CPF TGNGXCPV EQPVGPV JQYGXGT QRKPKQPU GZRTGUUGF KP 0#6+10#. *#'/12*+.+# FQ PQV PGEGUUCTKN[ TGĆ&#x192;GEV VJQUG QH VJG (QWPFCVKQP QT VJG GFKVQT PQT KU CP[ KPHQTOCVKQP KPVGPFGF VQ VCMG VJG RNCEG QH CFXKEG HTQO C SWCNKĆ&#x201A;GF OGFKECN RTCEVKVKQPGT QT JGCNVJ RTQHGUUKQPCN *CGOQRJKNKC (QWPFCVKQP #WUVTCNKC FQGU PQV GPFQTUG QT CUUWTG VJG RTQFWEVU RTQITCOU QT UGTXKEGU HGCVWTGF KP 0#6+10#. *#'/12*+.+# CPF FQGU PQV OCMG URGEKĆ&#x201A;E TGEQOOGPFCVKQPU HQT CP[ RTQFWEVU RTQITCOU QT UGTXKEGU 9G YGNEQOG TGRTQFWEVKQP QH CTVKENGU QT SWQVCVKQPU HTQO 0#6+10#. *#'/12*+.+# QP VJG WPFGTUVCPFKPI VJCV CEMPQYNGFIGOGPV KU OCFG QH 0#6+10#. *#'/12*+.+# CU VJG UQWTEG

24

Haemophilia Foundation Australia acknowledges the funding and assistance received from the Commonwealth Department of Health and Ageing which makes this publication possible.