National haemophilia no 198 june 2017

National

Haemophilia

Haemophilia Foundation Australia

www.haemophilia.org emophilia.org.au au No. 198, June 2017 17

REGISTER NOW!

CONTENTS 2

Canadian challenge

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From the President

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Conference

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WHD 2017

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10 years of home delivery

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WFH Musculoskeletal Congress 2017

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AHCDO Prophylaxis Study

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Hep C update

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New HFA Women’s booklet

15

Youth update

16

Youth News

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Calendar/ PROBE study update

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: Skyseeker/Hamza Butt

CANADIAN N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

CHALLENGE

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How is Australia tracking with its MyABDR usage?

Can we do better than Canada?

This is the question that has been put to HFA by the Canadian Hemophilia Society.

You may be aware that Canada has recently commenced using the system MyCBDR, which is a patient-controlled app and website for people with bleeding disorders to record their treatments and bleeds, and based on the same concept and system as MyABDR. MyABDR data is added to the Australian Bleeding Disorders Registry (ABDR), the system used

by Australian Haemophilia Treatment Centres to manage the clinical care of their patients. MyCBDR

data is added to the Canadian Bleeding Disorders Registry (CBDR) in a similar way.

Canada is working quickly to register Canadians with bleeding disorders on MyCBDR so that they can start using the system. +P VJG URKTKV QH HTKGPFN[ VTCPU 2CEKĆ‚E TKXCNT[ VJG Canadian Hemophilia Society has issued a challenge to HFA to measure the proportion of people in Australia using MyABDR in comparison to the proportion using MyCBDR in Canada.

The competition is likely to run between September to &GEGODGT CPF YKNN KPXQNXG C UWDUVCPVKCN RTK\G HQT a MyABDR or MyCBDR user in the winning country.

Is Australia up to it? More soon!

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FROM THE

PRESIDENT Gavin Finkelstein 6JG NCUV HGY OQPVJU JCXG DGGP C DWU[ RGTKQF HQT WU WORLD HAEMOPHILIA DAY

World Hemophilia Day was celebrated globally on 17 April. Haemophilia Foundation Australia joined World Federation of Hemophilia (WFH) and the international bleeding disorders community to show support for women and girls affected by bleeding disorders. The WFH theme Hear Their Voices enabled many women to share their personal stories on the WFH World Haemophilia Day YGDUKVG UVQTKGU QH NKXKPI YKVJ C DNGGFKPI FKUQTFGT CPF JQY they addressed their situation when they could not access appropriate information, diagnosis, care and treatment.

Other women and girls shared their experiences as carers, partners, mothers, and sisters of a person with a bleeding disorder. HFA launched the next in a suite of education TGUQWTEGU KP FGXGNQROGPV HQT YQOGP CPF IKTNU Finding out you carry the gene, as part of the Hear Their Voices campaign to present the experiences and stories of Australian women and girls who carry the gene.

We also joined the WFH campaign to light up landmarks around the world in red to raise awareness of bleeding disorders on the day. We pulled out all stops and 11 of the 70 global landmarks lit up red were located around Australia - all free of charge in the spirit of creating awareness and recognition. Thanks to our State/Territory (QWPFCVKQPU CPF VJG KPFKXKFWCNU YJQ JGNRGF YKVJ VJKU We also launched Red Tie Challenge in April to raise awareness of bleeding disorders and this campaign will continue for the whole of April each year.

NEW TREATMENT PRODUCTS

As I write this, there is still no funding pathway to new types of treatment products.

5GXGTCN GZVGPFGF JCNH NKHG HCEVQTU CTG TGIKUVGTGF KP #WUVTCNKC CPF QVJGT PQXGN RTQFWEVU CTG QP VJG YC[ %NKPKECN VTKCN FCVC demonstrates compelling reasons for some people to CFQRV VJGO HQT VJGKT VTGCVOGPV 5KIPKÆ‚ECPV KORTQXGOGPV KP SWCNKV[ QH NKHG CPF RTQFWEVKXKV[ KU GZRGEVGF NGUU infusions, better control of bleeding, better compliance with prophylaxis, reduced infection and thrombotic

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risk resulting from fewer infusions, less pain, suffering and family disruption, and reduced loss of work and school time. We made a submission to the National Blood Authority stakeholder consultation process about VJGUG RTQFWEVU KP /CTEJ 6JG 0$# JCU CFXKUGF they are currently considering submissions, including VJQUG TGEGKXGF KP #RTKN CPF VJCV VJG[ CTG JCXKPI HWTVJGT FKUEWUUKQPU QP UQOG OCVVGTU EQXGTGF 9G YGTG CDNG VQ CFXQECVG HQT DGUV RTCEVKEG VTGCVOGPV and funding for extended half-life factors and other GOGTIKPI RTQFWEVU CV CP GXGPV JQUVGF D[ VJG *QP 5VWCTV Robert MP and HFA at Parliament House in Canberra QP /C[ 6JG *QP &T &CXKF )KNNGURKG /2 #UUKUVCPV Minister for Health, welcomed us to Parliament House and spoke about his experience of treating haemophilia patients in the Haematology Unit when he was a doctor at the Royal Prince Alfred Hospital in Sydney. We were RNGCUGF VJCV TGRTGUGPVCVKXGU HTQO CNN UKFGU QH IQXGTPOGPV were present to hear the experiences and stories of EQOOWPKV[ OGODGTU NKXKPI YKVJ JCGOQRJKNKC FGUETKDKPI JQY KORQTVCPV KPPQXCVKQP KP VTGCVOGPV KU VQ KPFKXKFWCNU CPF HCOKNKGU NKXKPI YKVJ JCGOQRJKNKC 6JKU YCU C UKIPKÆ‚ECPV opportunity for HFA to explain the importance of new VJGTCRKGU CPF JQY VJG[ ECP KORTQXG JGCNVJ QWVEQOGU CPF quality of life.

CONFERENCE

Don’t forget to start planning for the Australia and New Zealand Conference in Melbourne 12-14 October 2017. HFA YKNN JCXG UQOG NKOKVGF HWPFKPI VQ CUUKUV DWV YG JQRG [QW will start putting some funds aside now so that you can be in Melbourne for the conference weekend. The program is looking good, but the friendship and fun is always great when the community gets together!

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. 4 )CXKP (KPMGNUVGKP *(# 2TGUKFGPV VJG *QP &T &CXKF )KNNGURKG /2 <GX (KUJOCP EQOOWPKV[ URGCMGT HQT *(# VJG *QP -GXKP #PFTGYU /2 &CP Credazzi, HFA Vice-President and community speaker for HFA

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L-R Dr Simon McRae, Haemophilia Centre Director, Royal Adelaide *QURKVCN CPF ENKPKECN URGCMGT HQT *(# &T /KMG (TGGNCPFGT /2 VJG *QP &T &CXKF )KNNGURKG /2

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2017

CONFERENCE EARLYBIRD REGISTRATIONS CLOSE 31 JULY https://www.secureregistrations.com/HFA2017/

The 18th Australian & New Zealand Conference on Haemophilia and Rare Bleeding Disorders will be held at the Pullman Albert Park, Melbourne, 12-14 October 2017.

The theme for the conference is â&#x20AC;&#x153;Looking Forward to Changeâ&#x20AC;?.

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

Our conferences bring together people with bleeding disorders and their families and carers, as well as health professionals, policy makers and industry. It is a great opportunity to learn, discuss and to plan for the future.

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We are excited to announce that Dr Paula James, Medical Director of the Women and Bleeding Disorders Clinic CV -KPIUVQP )GPGTCN *QURKVCN %CPCFC will be speaking at the Conference about women and bleeding disorders and Dr Justin Coulson, one of Australiaâ&#x20AC;&#x2122;s leading parenting experts, will open the Conference with an exciting plenary, speaking about his program, â&#x20AC;&#x2DC;21 Days to a Happier Familyâ&#x20AC;&#x2122; with special considerations for families with bleeding disorders.

The program is shaping up and EQXGTU EWTTGPV VQRKEU CPF KUUWGU VQ KPVGTGUV GXGT[QPG KPENWFKPI r r r

new treatments for haemophilia WUKPI FCVC VQ KORTQXG VTGCVOGPV and care women with bleeding disorders

r r r r r

r r r r

genetic testing NKXKPI YKVJ XQP 9KNNGDTCPF disease new approaches to managing pain HIV and hepatitis C NKXKPI YKVJ C DNGGFKPI FKUQTFGT at different life stages - newly diagnosed, children, adult life, ageing issues for families and siblings youth matters URQTV CPF JGCNVJ[ CEVKXKVKGU what is the future like.

The program will include a range of GZRGTV URGCMGTU RGQRNG NKXKPI YKVJ bleeding disorders as well as health professionals and others presenting HTQO FKHHGTGPV RGTURGEVKXGU

ABSTRACTS

We are calling for abstracts.

Abstracts may be accepted for a presentation in the main conference program or will be presented as a Poster in the Poster Exhibition.

9G GPEQWTCIG CDUVTCEVU TGNGXCPV VQ clinical practice and care, laboratory UEKGPEG TGUGCTEJ RQNKE[ QT NKXKPI with bleeding disorders or treatment complications.

Form can be downloaded below at www.haemophilia.org.au/ conferences. There will be prizes for the Best Abstract, and the Best Poster.

Submit your abstract by Friday 30 June 2017.

COMMUNITY FUNDING

REGISTRATION

HFA has allocated funding to assist community members with expenses to attend the Conference.

Haemophilia Foundations may also RTQXKFG HWPFKPI EQPVCEV [QWT NQECN foundation for more information.

Registrations are now open and can be made online at https://www.secureregistrations.com/ HFA2017/.

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.

More information can be found on our website www.haemophilia.org.au/ conferences.

We look forward to seeing you in Melbourne.

WHD 2017

WORLD HAEMOPHILIA DAY 'XGT[ #RTKN 9QTNF *CGOQRJKNKC &C[ KU TGEQIPKUGF worldwide to increase awareness of haemophilia and other inherited bleeding disorders. This is a critical effort since with increased awareness comes better diagnosis and access to care for the millions who remain without treatment.

DID YOU KNOW…

MANY WOMEN WITH BLEEDING DISORDERS ARE UNAWARE OF THEIR STATUS? Many carriers are not aware that their symptoms are abnormal and do not seek medical advice.

HEAR THEIR VOICES In 2017 the international theme was HEAR THEIR VOICES. HEAR THEIR VOICES was a global campaign to come together on World Haemophilia Day to show our support for the millions of women and girls affected by bleeding disorders.

The World Federation of Hemophilia (WFH) produced infographics to raise awareness about issues faced by women and girls affected by bleeding disorders. For example, a major concern is that many women with bleeding FKUQTFGTU FQ PQV TGEQIPKUG VJCV VJG[ JCXG DNGGFKPI U[ORVQOU CPF FQ PQV UGGM OGFKECN CFXKEG #U C TGUWNV VJG[ ECP JCXG WPVTGCVGF JGCX[ OGPUVTWCN DNGGFKPI QT GZEGUUKXG or prolonged bleeding after medical or dental procedures, surgery, injuries or childbirth.

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Read the stories from women worldwide at www.worldhemophiliaday.org HFA celebrated World Haemophilia Day with the launch of a new The Female Factors resource – *CGOQRJKNKC ƂPFKPI out you carry the gene. In this booklet Australian women talk about their reactions to diagnosis, their thoughts and tips on managing feelings and where to go for information and UWRRQTV 6Q FQYPNQCF XKUKV https://tinyurl.com/carry-gene.

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Women and girls respond Ìhey wnd in various ouÌ Ìhey ways Varry Ìhe haemop alÌered gen when hilia. The e ÌhaÌ Vaus re is no righ ow you ast aor es reaVt willVan Vome wrong way depend to feel. and whathis news on your own port and ers t this newgs sup situation oth means toto r ttin this ge ilia. Fo new s n] Von atio wrmsdif ferenVe youh. For some moph r situ women ge what they year wit hu le s] perh a with hae atever you have e aps LeV for peop Wh rtause they rs. t½sthought for man Van ma suppo y shoV . have fam ation yea t en orm and t ily memLers t inf in reV atmen Vurren g way feel. Tre e a lon how you ilia has Vom enVes date. ph eÝperi up to haemo on the mon nt to be e Vom n] based rt. importa ormatio desVribes som and suppo when n ing inf t girls] s ways ses follow ormatio a ing abou e and Vau inf Ì Th variou n in Ìha for me pond er wo to go men spe d gene y to feel. of oth where girls res alÌere lian wo ng wa n and ry Ìhe ns and m Ƃustra gene.

Wome ouÌ Ìhey Var reaVtio ht or wro n situation s are fro Varrying the d no rig ote n ow is wn r µu y me of Ìhe The There on you r some wo enVes philia. pend RALIA ny eÝperi . Fo ir ma N AUST haemo reaVt will de you the for DATIO LIA FOUN ught ans to OPHI HAEM ow you this news me they have tho mLers ily me at at e fam and wh Vonwrms wh they hav ws Vause this ne ps Le perha years]

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with hae mophilia . For othe shoV . Wha rs this new tever you s Van Vom r situation Vurrent info e as a ] getting rmation supp Van ma e how you a huge diffe ort and feel. Trea tment and renVe to haemop support hilia has for people Vome a long important with way in reVe to be up nt years. to date. t½s The follo wing info rmation] of other based on women and the eÝperie girls] desV reaVtions nVes ribes som and whe e Vommon re to go The µuo for informa tes are from tion and Ƃustralian their eÝp supp ort. erienVes women spea of Varrying ing abo the gene. ut

HAEMO

PHILIA

FOUNDA

TION AUSTRA

LIA

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

Sharing personal stories is an important way to acknowledge the experience of women and for them to feel more connected with other women in similar situations. The WFH 9QTNF *CGOQRJKNKC &C[ YGDUKVG RTQXKFGF CP QRRQTVWPKV[ HQT women around the world to share their stories and explain JQY DNGGFKPI FKUQTFGTU JCXG CHHGEVGF VJGKT NKHG

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LIGHT IT UP RED! Together with other landmarks from around the world, Australia had a landmark in each State and Territory turn red to celebrate World Haemophilia Day. Thank you to the people who attended the landmarks on the night and shared their photos.

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#FGNCKFG 1XCN

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Telstra Tower, Canberra

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Bell Tower, Perth

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Launceston Town Hall

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William Jolly Bridge, Brisbane

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Story Bridge, Brisbane

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AAMI Park, Melbourne

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Council House, Perth

WHD 2017

RED TIE CHALLENGE What is the RED TIE CHALLENGE? The HFA Red Tie Challenge asks you to wear a red tie during the month of April to raise awareness about bleeding disorders and recognise World Haemophilia Day.

States. NHF selected a Red Tie to symbolize the blood ties that bind our community. Based on the success of NHF, and with their agreement, HFA launched its own Red Tie Challenge in April 2017.

The RED TIE CHALLENGE was created by the National Hemophilia Foundation (NHF) in the United

It was great to see people and companies taking on and supporting the Red Tie Challenge in Australia

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Sam Reid and George Hewitt from the Sydney Swans show off their red ties

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HFA Council,

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HFNSW,

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AHCDO

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HFA, and special friends

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Saus and

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Captain Oates frock up in their red ties for World Haemophilia Day

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Penny McCarthy and Megan Walsh are Clinical Nurse Consultants at the Ronald Sawers Haemophilia Centre, Alfred Health, Melbourne

HOME DELIVERY

*QOG FGNKXGT[ QH ENQVVKPI HCEVQT TGRNCEGOGPV VJGTCR[ KU C UGTXKEG VJCV PGGFU VQ DG CTTCPIGF D[ treating health professionals. It may not be suitable HQT GXGT[QPG +P UQOG #WUVTCNKCP UVCVGU CPF VGTTKVQTKGU there are different arrangements in place from those FGUETKDGF KP VJKU CTVKENG CPF JQOG FGNKXGT[ OC[ PQV DG CXCKNCDNG VQ [QW +H [QW JCXG CP[ SWGUVKQPU CDQWV JQOG FGNKXGT[ URGCM VQ [QWT VTGCVKPI VGCO CV [QWT Haemophilia Treatment Centre.

+V DGGP PGCTN[ [GCTU UKPEG JQOG FGNKXGT[ QH TGEQODKPCPV HCEVQT EQPEGPVTCVGU DGECOG CXCKNCDNG KP 8KEVQTKC 5QOG families probably accept it as a normal part of haemophilia care and assume it has always been there! We thought we YQWNF TGÆ&#x192;GEV QP VJG KORCEV VJG JQOG FGNKXGT[ RTQITCO has had on our Centre.

CTGC YKVJ C UOCNN HTKFIG TWPPKPI C XGT[ DWU[ DNQQF DCPM UGTXKEG VJCV CNTGCF[ ETQUU OCVEJGU CRRTQZKOCVGN[ units of blood each month. As many HTC patients were working, many wanted to collect their product after-hours HTQO VJG DNQQF DCPM *QYGXGT VJKU DGECOG RTQDNGOCVKE as there was only one staff member working, who was dealing with all the demands of the hospital. If a major trauma incident was being managed by the hospital, the staff member had no time to dispense the factor and the patient was turned away.

CONVENIENCE

9G HGGN VJG DKIIGUV DGPGÆ&#x201A;V VQ RCVKGPVU JCU DGGP VJG EQPXGPKGPEG QH JQOG FGNKXGT[ CPF NGUU KPVGTTWRVKQP VQ GXGT[FC[ NKHG 4GIWNCT RTQFWEV FGNKXGT[ JCU KORTQXGF VJG management of haemophilia by patients at home and CPGEFQVCNN[ YG JCXG UGGP CP KORTQXGOGPV KP LQKPV JGCNVJ There is no more running out of factor and missing doses.

The team made the decision early that all patients using VTGCVOGPV CV JQOG CPF YJGTG FGNKXGT[ YCU CXCKNCDNG YQWNF DG VTCPUKVKQPGF VQ C JQOG FGNKXGT[ UGTXKEG /CP[ One of the biggest changes was reducing the workload embraced the change: no trudging to the hospital HQT VJG DNQQF DCPM UVCHH CV QWT JQURKVCN 2TGXKQWUN[ VJG XKCNU OQPVJN[ PQ RC[KPI HQT GZRGPUKXG ECT RCTMKPI KH [QW EQWNF Æ&#x201A;PF QPG *QYGXGT QVJGTU HGNV UQOG NQUU YKVJ PQV EQOKPI YQWNF CTTKXG HTQO VJG RJCTOCEGWVKECN EQORCP[ JCXG VQ to the hospital regularly and were slow to join. Initially for be unpacked, entered into the computer system and put UQOG UVKEMKPI VQ C PQOKPCVGF FGNKXGT[ FC[ CPF VKOG HTCOG KP VJG HTKFIG YJKEJ CNUQ KPXQNXGF UVQEM TQVCVKQP 1PEG GCEJ OQPVJ YCU EJCNNGPIKPI *QYGXGT CU FGNKXGT[ YKPFQYU VJG DNQQF DCPM UVCHH TGEGKXGF C TGNGCUG QTFGT HTQO VJG *CGOQRJKNKC 6TGCVOGPV %GPVTG *6% VJG[ YQWNF VJGP JCXG DGECOG OQTG CVVTCEVKXG CPF CHVGT JQWTU FGNKXGTKGU YGTG KPVTQFWEGF YG PQY JCXG CNN QH QWT RCVKGPVU WUKPI RTQFWEV VQ EQNNGEV VJG XKCNU HTQO VJG HTKFIG FKURGPUG VJGO XKC VJG CV JQOG QP JQOG FGNKXGT[ 6Q FCVG PQ QPG JCU CUMGF VQ IQ EQORWVGT UKIP VJGO QWV KP C NQI DQQM CPF IKXG VJGO VQ back to the old way of collecting from the hospital. the patient waiting at the window.

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

REDUCING THE WORKLOAD

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As an isolated occurrence it would not be too onerous, DWV YKVJ QXGT RCVKGPVU QP JQOG VJGTCR[ CNN WUKPI CRRTQZKOCVGN[ XKCNU C OQPVJ KV DGECOG XKCNU GCEJ month for blood bank to handle twice, and store in the HTKFIG 6JKU YCU QXGTYJGNOKPI HQT C UOCNN UVCHH KP C UOCNN

COMMUNICATION

In our Centre the nurses decided to manage the home FGNKXGT[ QTFGTU 6JKU JCU DGGP CP KPVGTGUVKPI CFFKVKQP to our work and has highlighted to us much about the

â&#x20AC;&#x153; If we note a move from the prescribed treatment plan or increased bleeding, we contact the patient to check everything is OKâ&#x20AC;? challenges of managing haemophilia at home. We realise that our patients would prefer to keep phone EQPXGTUCVKQPU VQ C OKPKOWO UQ 5/5 OGUUCIKPI from our computers has been a great success for all. The monthly contact by SMS has also kept a line of communication with the nurses and fostered a relationship with patients many of whom we may only see once a year. We often get a little message or query with the product order reply. For example, â&#x20AC;&#x2DC;Happy 'CUVGTo QT n*QY FQ + QTICPKUG VTCXGN NGVVGTU! 1T n*QY FQ I see the doctor?â&#x20AC;&#x2122;.

or on a Saturday morning (depending on the company whose product you use) has decreased the number of OKUUGF FGNKXGTKGU 6JKU KU KORQTVCPV VQ MGGR VJG EQUVU FQYP CPF VQ GPUWTG VJG UGTXKEG KU OCKPVCKPGF

9G JCXG PQVKEGF OCP[ RGQRNG CTG ETGCVWTGU QH JCDKV The patients who record each treatment and reply to the SMS messages in a timely fashion appear to be managing their condition well. If all of a sudden this RCVVGTP QH DGJCXKQWT EJCPIGU KV QHVGP UKIPCNU UQOGVJKPI has changed in their life. This could be happy or UCF GXGPV HQT GZCORNG C PGY DCD[ QT LQD KNNPGUU QT FGCNKPI YKVJ GNFGTN[ RCTGPVU KV EQWNF DG CP[VJKPI VJCV KU RTQXKFKPI C FKUVTCEVKQP # SWKEM SWGUVKQP QH n4 7 1-!o ECP DG GPQWIJ VQ NGV VJGO MPQY YG CTG JGTG VQ JGNR #U YG CTG QTICPKUKPI VJG OQPVJN[ JQOG FGNKXGT[ KV RTQORVU WU VQ EJGEM VJG KPFKXKFWCN VTGCVOGPV TGEQTFU DGHQTG VJG QTFGT KU RTQEGUUGF +H YG PQVG C OQXG HTQO the prescribed treatment plan or increased bleeding, YG EQPVCEV VJG RCVKGPV VQ EJGEM GXGT[VJKPI KU 1- CPF QHHGT HWTVJGT KPVGTXGPVKQP CU TGSWKTGF UWEJ CU n*QY KU the elbow bleed settling? Can we make you a physio appointment?â&#x20AC;&#x2122;

ABDR AND MYABDR

2TQXKFKPI VJG RCVKGPVU YKVJ FGNKXGT[ ECNGPFCTU YG CUM VJG RJCTOCEGWVKECN EQORCP[ VQ RTQXKFG VJGO HQT VJG patients) has assisted our patients in being organised VQ TGEGKXG VJG FGNKXGTKGU QP VJG UEJGFWNGF FGNKXGT[ FC[ KP VJG FGNKXGT[ YKPFQY 6JG KPVTQFWEVKQP QH CHVGT JQWTU FGNKXGT[ YKPFQYU HTQO RO VJTGG GXGPKPIU RGT YGGM

For us the ABDR (Australian Bleeding Disorders Registry) has been another useful tool to manage treatment at JQOG 9G PQY JCXG QPG RNCEG YJGTG CNN VJG HCEVQT treatment information is stored. This includes order forms and patient treatment records (MyABDR) and a TGCN VKOG HCEVQT KPXGPVQT[ HQT GCEJ RCVKGPV 9G WUG VJG #$&4 EQPUVCPVN[ YG PQY JCXG VYQ EQORWVGT UETGGPU CV GCEJ FGUM UQ KV KU TGCFKN[ CEEGUUKDNG CNN FC[ RTQXKFKPI up-to-date information about our patients. The MyABDR app is constantly being updated and tweaked making it OQTG WUGT HTKGPFN[ /QUV QH QWT RCVKGPVU Ć&#x201A;PF KV XGT[ easy to use now.

Good communication between the HTC, pharmaceutical company, patient and support from the National blood Authority has been the key to ongoing success of this program.

Sometimes it is not all smooth sailing, and a little KPVGPUKXG GPEQWTCIGOGPV KU TGSWKTGF D[ UQOG VQ IGV their order in on time, MyABDR records up-to-date and DG JQOG VQ UKIP HQT VJG FGNKXGT[ *QYGXGT YG VJKPM VJCV HTC staff and patients would agree that this program VJCV YG PQY VCMG HQT ITCPVGF JCU DGGP C XGT[ RQUKVKXG addition to managing haemophilia at home.

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

STREAMLINING

A noticeable change has been the reduction of stockpiling, now that patients trust the system and know VJG[ YKNN TGEGKXG HCEVQT CU TGSWKTGF GCEJ OQPVJ 6JKU KP VWTP JCU TGFWEGF YCUVCIG CU VJG XKCNU CTG PQY TQVCVGF regularly and not hiding in the back of the fridge and accidently expiring.

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Johanna Newsom is Senior Physiotherapist at Childrenâ&#x20AC;&#x2122;s Hospital at Westmead, Sydney

WFH MUSCULOSKELETAL

CONGRESS 2017 Johanna Newsom

The 15th WFH International Musculoskeletal Congress YCU JGNF KP 5GQWN 4GRWDNKE QH -QTGC /C[ 1XGT 250 delegates attended, representing more than 40 countries on all 6 inhabited continents. All delegates had a particular interest in the management of joint and muscle complications as a result of haemophilia, and with the Congress proudly and deliberating promoting a pOWUEWNQUMGNGVCN HCOKN[ HGGNq KPRWV HTQO GXGT[ FGNGICVG was encouraged and welcomed, which led to some interesting and robust discussions!

6JG ,9 /CTTKQVV *QVGN KP 5GQWN YCU VJG XGPWG HQT VJKU yearâ&#x20AC;&#x2122;s Congress. Located on the southern side of the *CP 4KXGT KP CP CTGC FGXGNQRGF RTKOCTKN[ HQT VJG 5WOOGT 1N[ORKE )COGU YG HQWPF QWTUGNXGU KP C region known as Gangnam â&#x20AC;&#x201C; perhaps best known by VJG FGNGICVGU DGECWUG QH VJG KEQPKE - 2QR JKV p)CPIPCO 5V[NGq D[ -QTGCP CTVKUV 2U[ #PF VJKU UQPI DGECOG VJG WPQHĆ&#x201A;EKCN CPVJGO QH VJG %QPITGUU IGVVKPI UQOG IQQF CKT VKOG CV VJG QHĆ&#x201A;EKCN EQPHGTGPEG FKPPGT

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

CONGRESS MILESTONES

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1RGPKPI YKVJ C UGUUKQP VKVNGF p&TKXKPI CJGCF YKVJ QPG G[G QP VJG TGCT XKGY OKTTQTq UQOG QH VJG NQPI UVCPFKPI members of the World Federation of Hemophilia (WFH) /WUEWNQUMGNGVCN %QOOKVVGG TGĆ&#x192;GEVGF QP KVU JWODNG beginnings in 1977 when a small group of six interested clinicians met in the lounge room of an inspired QTVJQRCGFKE UWTIGQP 6JKU NGF VQ QHĆ&#x201A;EKCN TGEQIPKVKQP D[ the WFH in 1984, and the commencement of regular musculoskeletal congresses in the 1990s. This session rounded out with presentations predicting the future of both physiotherapy and orthopaedic surgery in haemophilia â&#x20AC;&#x201C; fortunately, both sounded exciting

CPF RTQOKUKPI 6JGUG ICXG C IQQF VGCUGT HQT VJG highlight sessions to come â&#x20AC;&#x201C; the effects (and costs) of GZGTEKUG CPF VTCKPKPI FGDCVG CTQWPF FGĆ&#x201A;PKVKQPU CPF OCPCIGOGPV QH U[PQXKVKU CPF CP COC\KPI QRRQTVWPKV[ to â&#x20AC;&#x153;talk to the expertsâ&#x20AC;? with a consultation corner discussing complex cases and issues that are too often ignored.

EXERCISE AND TRAINING

+V KU YGNN GUVCDNKUJGF PQY VJCV DGKPI CU Ć&#x201A;V CPF CEVKXG as possible is ideal for people with haemophilia â&#x20AC;&#x201C; most RGQRNG YQPoV EQORNGVG C XKUKV VQ VJGKT *6% YKVJQWV DGKPI CUMGF CDQWV VJGKT RJ[UKECN CEVKXKV[ CPF CDKNKV[ VQ RCTVKEKRCVG 6JKU KU EQOOQPN[ HQNNQYGF WR YKVJ CFXKEG HTQO VJG VGCO CPF GXGP URGEKĆ&#x201A;E GZGTEKUGU CPF CEVKXKVKGU often recommended by the physio. Appropriate GZGTEKUGU CPF CEVKXKVKGU ECP DG QPG QH VJG OQUV GHHGEVKXG (and cheapest!) methods of managing haemophilia and minimising bleeds, pain and other problems.

In this session, we heard about how to plan an GZGTEKUG RTQITCO UCHGN[ KPENWFKPI VJG XKVCN UVGR QH JCXKPI C RJ[UKQ QT QVJGT GZRGTV INQDCNN[ GXCNWCVG VJG GPVKTG OWUEWNQUMGNGVCN U[UVGO UETGGPKPI HQT RTGXKQWU injuries, damage and other issues with joints, or muscle YGCMPGUU DGHQTG EQOOGPEKPI C PGY CEVKXKV[ 9G FKUEWUUGF UCHG YC[U VQ RTQITGUU CEVKXKVKGU CPF VTCKP JCTFGT VQ IGV Ć&#x201A;VVGT CPF UVTQPIGT CPF VCNMGF CDQWV JQY the muscles, joints and bones respond to training. We also heard about some scenarios where poor training technique lead to injuries and problems â&#x20AC;&#x201C; a good reminder to us all to take it easy and listen to our bodies (and the haemophilia team) when we decide to hit the gym!

#WUVTCNKCP RJ[UKQVJGTCRKUVU CV VJG 9(* /5- %QPITGUU

5[PQXKVKU KU C VGTO EQOOQPN[ JGCTF KP JCGOQRJKNKC EKTENGU &GĆ&#x201A;PGF CU CP KPĆ&#x192;COOCVKQP QH VJG U[PQXKWO or joint lining, it is known to occur as a result of bleeding into joints. With only one or two bleeds, the JQRG KU VJCV VJKU U[PQXKVKU TGUQNXGU DWV YKVJ OQTG CPF OQTG DNGGFU KPVQ VJG UCOG LQKPV VJG U[PQXKVKU becomes chronic and can pose a much bigger EJCNNGPIG VQ VTGCV CPF OCPCIG %JTQPKE U[PQXKVKU is thought to be the starting point for serious degeneration and damage in a joint.

There was a lot of debate around how to decide YJGP U[PQXKVKU DGEQOGU EJTQPKE U[PQXKVKU CPF YJCV assessments we can use to help make that distinction â&#x20AC;&#x201C; VJG *CGOQRJKNKC ,QKPV *GCNVJ 5EQTG C EQORTGJGPUKXG clinical assessment, and imaging (like X-rays or /4+U CNN UGGO VQ JCXG VJGKT RCTV VQ RNC[e VJG VCMG home message is that regular check-ups will help to identify any early changes in the joint lining, and the information gained from these assessments will help to VCKNQT CP KPFKXKFWCN VTGCVOGPV RTQITCO HQT CP[QPG YJQ CRRGCTU VQ JCXG KPĆ&#x192;COOCVKQP KP VJGKT LQKPVU 5Q KV KU important to keep those clinic appointments!

TALK TO THE EXPERTS

5GXGTCN URGCMGTU HTQO FKHHGTGPV EQWPVTKGU RTGUGPVGF cases to help us all learn from each other in an KPETGFKDN[ VJQWIJV RTQXQMKPI UGUUKQP 6JGTG YCU NKXGN[ FKUEWUUKQP CTQWPF XCTKQWU UWTIKECN CRRTQCEJGU timing and style of physiotherapy and rehabilitation, and the need to take into account how easy it is to access factor.

One of the most memorable quotes of the conference ECOG HTQO C 7- QTVJQRCGFKE UWTIGQP YJQ YCU VCNMKPI CDQWV SWGUVKQPU JG JCF NGCTPV VQ CUM QXGT [GCTU QH VTGCVKPI JCGOQRJKNKC RCVKGPVU 5RGEKĆ&#x201A;ECNN[ FKUEWUUKPI GNDQY KUUWGU CPF NQUU QH OQXGOGPV CPF Ć&#x192;GZKDKNKV[ KP VJKU LQKPV JG VCNMGF about asking patients â&#x20AC;&#x153;Can you reach both ends of your alimentary tract? That is, can you put food in, and deal with the other end when it comes out?â&#x20AC;?. In a nutshell, this simple question highlighted the functional impact of joint bleeds and damage, and how patients and clinicians need to be open and honest about the issues they are facing, and help each other to set realistic goals and look for solutions together.

Seoul was a wonderful choice of location, and the %QPITGUU JCF RNGPV[ QH 5QWVJ -QTGCP KPĆ&#x192;WGPEG VJTQWIJQWV - some amazing catering, fascinating insights into the haemophilia treatment centres in Seoul, and a cultural show at the Congress dinner that had us all participating and clapping along. The Musculoskeletal Congress is CP KPXCNWCDNG CFFKVKQP VQ VJG 9(* ECNGPFCT HQT ENKPKEKCPU with an interest in the impact of haemophilia on joint and muscle health, and the intimate nature of the Congress RTQXKFGU CORNG QRRQTVWPKV[ VQ OGGV RGQRNG HTQO QVJGT countries and discuss the management practices being used around the world. There is plenty of interest and exciting research coming up in this area, which can only DG VQ VJG DGPGĆ&#x201A;V QH CNN RGQRNG KPXQNXGF KP VJG YQTNF QH haemophilia â&#x20AC;&#x201C; and it is so exciting that Australian clinicians JCXG VJG EJCPEG VQ CVVGPF CPF NGCTP HTQO VJGUG GXGPVU CPF that HFA supports us in sharing that knowledge! ,QJCPPC TGEGKXGF RCTVKCN HWPFKPI HTQO 2Ć&#x201A;\GT CPF Novo Nordisk to attend the 2017 WFH International Musculoskeletal Congress.

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

SYNOVITIS

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Sumit Parikh is the AHCDO ABDR Senior Research Fellow

AHCDO PROPHYLAXIS STUDY Sumit Parikh

Prophylaxis is considered standard of care in all EJKNFTGP YKVJ UGXGTG JCGOQRJKNKC *QYGXGT VJG timing of commencement, dosing regimen and EQPVKPWCVKQP QH RTQRJ[NCZKU KPVQ CFWNVJQQF XCTKGU HQT GCEJ KPFKXKFWCN RCVKGPV .CUV [GCT #*%&1 EQPFWEVGF C NCTIG TGVTQURGEVKXG UVWF[ characterising current practice with regards to the use of prophylactic clotting factor infusions in patients with haemophilia A and haemophilia B in Australia.

1XGTCNN VJG RTQRQTVKQP QH RCVKGPVU TGEGKXKPI RTQRJ[NCZKU

CEEQTFKPI VQ FKUGCUG UGXGTKV[ CPF CIG EQORCTGF YGNN YKVJ QVJGT FGXGNQRGF PCVKQPU 2TQRJ[NCZKU KP EJKNFTGP CPF [QWPI CFQNGUEGPVU YKVJ UGXGTG JCGOQRJKNKC # CPF JCGOQRJKNKC $ YCU PGCT WPKXGTUCN YJKEJ KU CP KORTGUUKXG CEJKGXGOGPV CPF ECUV C RQUKVKXG TGĆ&#x192;GEVKQP QP VJG FGNKXGT[ of multidisciplinary haemophilia care in Australia.

ADHERENCE

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

Adherence to prophylaxis among different age groups YCU CNUQ GXCNWCVGF CU RCTV QH VJG UVWF[ CPF YCU FGVGTOKPGF D[ VJG TCVKQ QH QDUGTXGF VQ GZRGEVGF HCEVQT usage. Young adults were the most non-adherent group VQ RTQRJ[NCZKU CPF VJKU YCU ENGCTN[ GXKFGPV HTQO VJG results. As a consequence of this, despite patients being CDNG VQ UGNH CFOKPKUVGT HCEVQT PQP CFJGTGPEG RTGXGPVU VJGO HTQO CEJKGXKPI VJG TGCN DGPGĆ&#x201A;V QH RTQRJ[NCZKU treatment (reducing bleeds and better quality of life).

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6JKU UVWF[ RTQXKFGF C XCNWCDNG KPUKIJV KPVQ VJG current prophylaxis practice in Australia plus an opportunity to take this further and formally assess VJG TGCN DGPGĆ&#x201A;V QH RTQRJ[NCZKU BLEED OUTCOMES AND MYABDR

The biggest challenge to formally assess the real DGPGĆ&#x201A;V QH RTQRJ[NCZKU KU VJG PGGF VQ CEVKXGN[ OQPKVQT bleed outcome. MyABDR is a secure app for smartphones and a website for patients with bleeding disorders to self-record their home treatments CPF DNGGFU *QYGXGT VJG WRVCMG QH /[#$&4 JCU

1XGTCNN VJG proportion QH RCVKGPVU TGEGKXKPI prophylaxis (according to FKUGCUG UGXGTKV[ CPF CIG compared well with other FGXGNQRGF PCVKQPU â&#x20AC;? been disappointingly low, which means that a reliable CUUGUUOGPV QH JQY GHHGEVKXG VJG RTQRJ[NCZKU VTGCVOGPV JCU been for patients cannot be determined.

There are a lot of resources and support material CXCKNCDNG HQT RCVKGPVU CPF VJGKT ECTGIKXGTU VQ CUUKUV KP using the MyABDR application and its features and it is KP GXGT[QPGoU DGUV KPVGTGUVU VQ VCMG CFXCPVCIG QH VJKU CPF make the most of the application. This is because the usefulness of the â&#x20AC;&#x2DC;MyABDRâ&#x20AC;&#x2122; application is not restricted to self-assessment but it also builds the knowledge DCUG VQ DG CDNG VQ FGVGTOKPG VJG GHHGEVKXGPGUU QH XCTKQWU VTGCVOGPVU RTQXKFGF VQ RCVKGPVU YKVJ DNGGFKPI disorders. The community could gain enormously with KPFKXKFWCNKUGF RTQRJ[NCZKU GOGTIKPI GZVGPFGF JCNH NKHG RTQFWEVU CPF QVJGT PQXGN VTGCVOGPV TGIKOGU JQYGXGT this cannot be ascertained without being able to formally assess the treatment outcomes.

Suzanne Oâ&#x20AC;&#x2122;Callaghan is HFA Policy Research and Education Manager

C

HEP UPDATE 5W\CPPG 1o%CNNCIJCP It has been welcome news to hear from Haemophilia Treatment Centres that most of their patients with JGRCVKVKU % JCXG PQY DGGP VTGCVGF QT JCXG CRRQKPVOGPVU with their hepatitis clinic to discuss treatment, and that PGCTN[ CNN QH VJQUG YJQ JCXG EQORNGVGF VTGCVOGPV JCXG been cured.

9JKNG VJG UWEEGUU QH VJG PGY VTGCVOGPVU JCU DGGP XGT[ exciting, Australian hepatitis clinicians and Haemophilia 6TGCVOGPV %GPVTGU JCXG C HGY TGOKPFGTU HQT RGQRNG YKVJ hepatitis C: U

Donâ&#x20AC;&#x2122;t wait until you have symptoms of liver disease to start treatment. .KXGT FKUGCUG YKVJ JGRCVKVKU % ECP CFXCPEG UKNGPVN[ CPF [QW OC[ PQV DG CYCTG VJCV [QW CTG FGXGNQRKPI CFXCPEGF NKXGT FKUGCUG UWEJ CU EKTTJQUKU QT NKXGT ECPEGT

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6JGTG JCXG DGGP IQQF EWTG TCVGU HQT JGRCVKVKU % treatment in people with cirrhosis â&#x20AC;&#x201C; BUT treating hepatitis C BEFORE you develop cirrhosis usually means a shorter course of treatment and very high success rates

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Make sure you go back to the doctor treating your hepatitis C or hepatitis clinic nurse vÂ&#x153;Ă&#x20AC; Ă&#x17E;Â&#x153;Ă&#x2022;Ă&#x20AC; wÂ&#x2DC;>Â? Ă&#x20AC;iĂ&#x192;Ă&#x2022;Â?Ă&#x152;Ă&#x192; 12 weeks AFTER completing treatment. This will tell you for sure whether your hep C has been cured.

6JGUG VTGCVOGPVU JCXG PQV TGCEJGF C EWTG TCVG [GV CPF KH [QW JCXG PQV DGGP EWTGF [QW CPF [QWT doctor will need to look at other treatment options

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If you have cirrhosis and have successful treatment, you will still need to have liver health checks regularly VQ EJGEM [QWT NKXGT JGCNVJ CPF MGGR CP G[G QWV HQT UKIPU QH CFXCPEKPI NKXGT FKUGCUG QT EQORNKECVKQPU VJCV ECP DG managed.

WHATâ&#x20AC;&#x2122;S STOPPING YOU FROM TREATMENT?

6JG #WUVTCNKCP )QXGTPOGPV JCU EQOOKVVGF VQ GNKOKPCVKPI JGRCVKVKU % KP #WUVTCNKC D[ 9G DGNKGXG YG ECP CEJKGXG this much earlier in the bleeding disorders community.

KEY MESSAGES

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&QPoV YCKV WPVKN [QW JCXG U[ORVQOU QH NKXGT disease to start treatment

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6TGCVKPI JGRCVKVKU % $'(14' [QW FGXGNQR EKTTJQUKU UJQTVGT VTGCVOGPV EQWTUG XGT[ JKIJ success rates

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/CMG UWTG [QW IQ DCEM HQT [QWT Ć&#x201A;PCN TGUWNVU weeks AFTER completing treatment

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+H [QW JCXG EKTTJQUKU CPF JCXG UWEEGUUHWN VTGCVOGPV [QW YKNN UVKNN PGGF VQ JCXG NKXGT health checks regularly

*(# KU MGGP VQ OCMG UWTG VJCV GXGT[ #WUVTCNKCP YKVJ C bleeding disorder and hepatitis C has the opportunity to access treatment as soon as possible. We are aware that for some people there are barriers that stop them from accessing the new treatments. +H [QW QT UQOGQPG [QW MPQY JCXG C RTQDNGO VJCV KU stopping you from accessing hepatitis C treatment, we strongly encourage you to talk to your Haemophilia Treatment Centre or your local Foundation or HFA to see what solutions can be found.

Thanks to Hepatitis Australia for permission to adapt the World Hepatitis Day 2014 poster.

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

HEP C REMINDERS

If you have hep C, talk to your doctor about treatment. Itâ&#x20AC;&#x2122;s easy and it could save your life.

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s

NEW HFA WOMENâ&#x20AC;&#x2122;S BOOKLET

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Finding out you carry the gene for haemophilia can raise C NQV QH FKHHGTGPV HGGNKPIU GXGP KP YQOGP CPF IKTNU YJQ suspected they might carry the gene. .

HFAâ&#x20AC;&#x2122;s new booklet Haemophilia: Finding out you carry the gene explores the responses of Australian women and IKTNU +V EQXGTU r How to know if you carry the gene r

%QOOQP TGCEVKQPU VQ Ć&#x201A;PFKPI QWV [QW ECTT[ VJG IGPG

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Where to go for information and support

HOW TO OBTAIN THE BOOKLET

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A copy of the booklet is an insert in this issue of National Haemophilia

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Download the Haemophilia: Finding out you carry the gene booklet from the HFA website https://tinyurl.com/carry-gene

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Contact your local Foundation or HFA (email hfaust@haemophilia.org.au or phone 1800 807 173) for print copies

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

ACKNOWLEDGING THE EXPERIENCE OF WOMEN

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Women and girls respond in various ways when Ă&#x152;hey wnd ouĂ&#x152; Ă&#x152;hey Varry Ă&#x152;he alĂ&#x152;ered gene Ă&#x152;haĂ&#x152; Vauses haemophilia. There is no right or wrong way to feel. ow you reaVt will depend on your own situation and what this news means to you. For some women this news Vonwrms what they have thought for many years] perhaps LeVause they have family memLers

with haemophilia. For others this news Van Vome as a shoVÂ&#x17D;. Whatever your situation] getting support and Vurrent information Van maÂ&#x17D;e a huge differenVe to how you feel. Treatment and support for people with haemophilia has Vome a long way in reVent years. t½s important to be up to date.

The following information] based on the eĂ?perienVes of other women and girls] desVribes some Vommon reaVtions and where to go for information and support.

The Âľuotes are from Ć&#x201A;ustralian women speaÂ&#x17D;ing about their eĂ?perienVes of Varrying the gene.

HAEMOPHILIA FOUNDATION AUSTRALIA

YJQ YGTG KPXQNXGF KP VJG DQQMNGV UJCTKPI RGTUQPCN experiences is a powerful way of supporting each other and the wider community of women and girls who carry the gene. They were keen to share the message that YQOGP KP VJKU UKVWCVKQP CTG PQV CNQPG CPF VQNF VJGKT UVQT[ and outlined the strategies they used to manage their FKCIPQUKU KP VJG JQRG VJCV KV OKIJV DG QH XCNWG VQ QVJGT women. Our sincere thanks to these women for their generosity in sharing their experiences.

The booklet was launched by HFA on 11 April 2017 as part of the international World Haemophilia Day Hear Their Voices campaign, which aimed to show support for the millions of women and girls affected by bleeding disorders.

THE FEMALE FACTORS RESOURCES

p+V YCUPoV CP[ ITGCV UWTRTKUG s VJKU LWUV DGECOG C DKV more information to help with decisions.â&#x20AC;?

This booklet is part of the suite of resources that will be published in the HFA The Female Factors project. Other TGUQWTEGU EQXGT

â&#x20AC;&#x153;When I was diagnosed I felt gutted.â&#x20AC;?

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â&#x20AC;&#x153;I found out that I carried the gene when I was 12 weeks pregnant. The stress was enormous as I had to make some important decisions fast.â&#x20AC;?

#PF KP FGXGNQROGPV

6JG DQQMNGV VQRKEU CPF EQPVGPV YGTG FGXGNQRGF HTQO the suggestions and feedback of the HFA Womenâ&#x20AC;&#x2122;s %QPUWOGT CPF *GCNVJ 2TQHGUUKQPCN 4GXKGY )TQWRU 6JGUG CTG XQNWPVGGTU CPF KPENWFG YQOGP YJQ ECTT[ VJG IGPG and specialist health professionals, and we appreciate their VKOG CPF GZRGTV CFXKEG ITGCVN[ Quotes and personal stories contributed by Australian YQOGP YJQ ECTT[ VJG IGPG HQTO C XGT[ KORQTVCPV CURGEV QH VJG DQQMNGV 6JGUG CEMPQYNGFIG VJG XCTKGF GZRGTKGPEG QH YQOGP CPF IKTNU YJGP VJG[ CTG FKCIPQUGF CPF VJG XGT[ UVTQPI KORCEV VJCV FKCIPQUKU ECP JCXG (QT VJG YQOGP

A snapshot of bleeding disorders in females (published June 2016)

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Diagnosis

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Symptoms, treatment and care

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Family planning, pregnancy and birth

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Telling others

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nformation for teenage girls and young women

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For more information about the HFA The Female Factors project, contact HFA: Suzanne Oâ&#x20AC;&#x2122;Callaghan (adult women) â&#x20AC;&#x201C; socallaghan@haemophilia.org.au Hannah Opeskin (young women/teenage girls) â&#x20AC;&#x201C; hopeskin@haemophilia.org.au T: 1800 807 173

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

YOUTH UPDATE *CPPCJ 1RGUMKP

YOUTH LEAD CONNECT

Youth Lead Connect participants are currently working with HFA and their local Haemophilia (QWPFCVKQPU VQ FGXGNQR CRRTQRTKCVG IQCNU CPF FGVGTOKPG YJKEJ CEJKGXGOGPVU CTG DGUV UWKVGF VQ VJGKT personal abilities and their Foundationâ&#x20AC;&#x2122;s needs, as well accommodating for skills building and personal ITQYVJ 6JKU KPENWFGU NGCTPKPI JQY VQ JCXG C NGCFGTUJKR or mentoring role in their local community, how to work with their local Haemophilia Foundation and CEJKGXG OWVWCN IQCNU CPF QDLGEVKXGU 2CTVKEKRCPVU CNUQ JCXG CP QRRQTVWPKV[ VQ GZRGTKGPEG CPF WPFGTUVCPF VJG RTQEGUUGU VJCV CTG KPXQNXGF YKVJ RNCPPKPI CPF FGXGNQRKPI CRRTQRTKCVG CEVKXKVKGU KPENWFKPI VJG TQNG QH Haemophilia Foundation Committees.

YLC participants gain unique knowledge into how their Foundation works and the ways in which important goals CTG FTKXGP 6JG[ YQTM VQYCTFU OWVWCN IQCNU YKVJ VJGKT Foundations and assist their Foundation, using their existing skills to increase their leadership and mentoring ECRCEKV[ QT YQTM QP CPF FGXGNQR CFFKVKQPCN UMKNNU )QCNU KP VJG RTQEGUU QH FGXGNQROGPV KPENWFG r

Two youth and one mentor are working together and with their Haemophilia Foundation to assess whether VJGTG KU KPVGTGUV HQT C [QWVJ GXGPV CPF JQY KV UJQWNF TWP 6JKU JCU UQ HCT KPXQNXGF QPG [QWVJ YTKVKPI CP Expression Of Interest for the Foundation newsletter, CPF YKNN CNUQ KPXQNXG YTKVKPI C RTQRQUCN VQ (QWPFCVKQP After an initial strategy meeting between the two youth, one youth will present to the Foundation %QOOKVVGG OGGVKPI QP VJGKT Æ&#x201A;PFKPIU CPF UWIIGUVKQPU

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5GXGTCN ;.% RCTVKEKRCPVU CTG YTKVKPI C RGTUQPCN UVQT[ for Factored In. Personal stories help youth connect with each other and are an important part of peer support, mentoring and leadership in the community.

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One youth is working with their Foundation to assist the Foundationâ&#x20AC;&#x2122;s daily technology outputs and further utilise their technology skills. This includes assisting with the website, by helping keep it up to date with the latest information and documents.

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One youth is working with their Foundation to CFXQECVG HQT [QWPI RGQRNG YJQ NKXG KP PQP metropolitan areas of their state/territory to be KPXQNXGF KP C NQECN [QWVJ GXGPV KPENWFKPI EQPVTKDWVKPI KFGCU CDQWV UWKVCDNG NQECVKQPU CPF CEVKXKVKGU

HAEMOPHILIA & RARE BLEEDING DISORDERS CONFERENCE 2017

This year, the Australian & New Zealand Conference on Haemophilia & Rare Bleeding Disorders will be on 12-14 October and held in Melbourne.

Youth session â&#x20AC;&#x201C; busting myths 5KOKNCT VQ RTGXKQWU EQPHGTGPEGU VJGTG YKNN DG C [QWVJ session, but this time it will be a bit different! This session KU CNN CDQWV DWUVKPI O[VJU VQ FQ YKVJ NKXKPI YKVJ C DNGGFKPI FKUQTFGT 6JG UGUUKQP YKNN EQXGT C YKFG TCPIG QH VQRKEU including sport, employment, discrimination, sex, tattoos and more.

6JG QPN[ YC[ [QWoNN Æ&#x201A;PF QWV YJCV VJG VTWVJU CTG is if you attend!

6JGTG OC[ DG UQOG HWPFKPI CXCKNCDNG UQ KH [QWoTG KPVGTGUVGF KP CVVGPFKPI VJG EQPHGTGPEG XKUKV VJG *(# website: www.haemophilia.org.au for more information about how to apply.

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

Youth Lead Connect (YLC) is a leadership program FGXGNQRGF D[ *CGOQRJKNKC (QWPFCVKQP #WUVTCNKC *(# VQ DWKNF GFWECVKQP CPF NKHG UMKNNU HQT [QWPI RGQRNG YKVJ DNGGFKPI FKUQTFGTU 6JG RTQITCO DGICP KP CPF HQNNQYU CP CRRNKECVKQP RCVJYC[ UKOKNCT VQ C LQD application process. The program encourages youth to UVGR WR KP VJGKT NQECN EQOOWPKV[ CPF KPETGCUG DQVJ VJGKT personal and leadership growth.

15

GEOFF 6TCXGNNKPI KU QPG QH VJG OQUV TGYCTFKPI GZRGTKGPEGU + DGNKGXG [QW ECP JCXG KP NKHG +V KU KORQTVCPV [QW FQPoV NGV your haemophilia stop you from exploring the world! I O[UGNH JCXG JCGOQRJKNKC CPF + CO C OCUUKXG DGNKGXGT KP not letting that get in the way of anything. A few simple steps can be taken to ensure that you are able to stay on top when away from home.

GZRNCKPKPI YJ[ [QW JCXG VJG IGCT + LWUV FGENCTG O[ VTGCVOGPV VQ CP[QPG YJQ OKIJV Æ&#x201A;PF KV KP O[ DCI + Æ&#x201A;PF NCPIWCIG DCTTKGTU ECP ECWUG EQPHWUKQP UQ DGKPI QXGTVN[ QRGP CDQWV VTCPURQTVKPI OGFKECVKQP FGHWUGU any possible issues. Again, your Haemophilia Treatment %GPVTG YKNN DG CDNG VQ RTQXKFG [QW YKVJ CNN VJG PGEGUUCT[ documentation about your treatment.

I encourage you to speak to your Haemophilia Treatment Centre about where you plan to travel. They will be able to help you prepare any documents that you need and they will be able to help you plan for your visit and let you know what to do and how to be prepared for particular countries or airlines.**

6JG NGCUV HWP VJKPI VQ JCXG KP VJG DCEM QH [QWT OKPF DWV perhaps the most important, is to be a little bit careful.

You are likely thousands of kilometres away from home CPF YJGP VTCXGNNKPI KV KU GCU[ VQ IGV ECTTKGF CYC[ KP C good moment. The last thing you want to do is end up YKVJ C DCF KPLWT[ KP C HQTGKIP EQWPVT[ KOOGTUG [QWTUGNH KP VJG EWNVWTG CPF GZRGTKGPEG GXGT[VJKPI [QW ECP DWV KV RC[U off to double check your decisions.

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

When transporting product, chances are you donâ&#x20AC;&#x2122;t want VQ GPF WR KP C HQTGKIP RTKUQP $GUV YC[ VQ CXQKF CP[ JQNF WRU KU VQ GPUWTG [QW JCXG VQPPGU QH FQEWOGPVCVKQP

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Get out there!

YOUTH TRAVEL STORIES

SAM

9JKEJ OGCPV VJCV + YQWNF PQY JCXG VQ YQTM QWV JQY + YCU meant to transport what amounted to a â&#x20AC;&#x153;Shedloadâ&#x20AC;? of factor VIII, and what, if any regulations there were for 1.

Taking factor out of Australia, and

2.

What Japan required in order to bring it into the country.

GETTING ORGANISED

/[ Ć&#x201A;TUV RQTV QH ECNN YCU O[ *CGOQRJKNKC 6TGCVOGPV Centre and the team and my second port of call was the Japanese Embassy.

In terms of taking factor out of Australia, there werenâ&#x20AC;&#x2122;t any FQEWOGPVU YJKEJ + PGGFGF VQ EQORNGVG *QYGXGT [QW should always double check to make sure this is the case with your treatment team and social worker.

BUT I was required to complete documents in order to bring my factor into Japan. The application is called a Yakkan Shoumei, and the form basically required me VQ EQORNGVG KV CPF RTQXKFG UQOG FQEWOGPVCVKQP CPF information about the products, a letter from my specialist EQPĆ&#x201A;TOKPI + PGGFGF VJG RTQFWEVU CPF VQ CFXKUG JQY OWEJ I was bringing into Japan (also including details about PGGFNGU U[TKPIGU CPF CNEQ YKRGU CPF O[ Ć&#x192;KIJV FGVCKNU

YJGP + YCU CTTKXKPI CPF NGCXKPI I had to post this to Japan, including with it a selfCFFTGUUGF GPXGNQRG CPF C p%QWRQP KPVGTPCVKQPCN FG rĂŠponseâ&#x20AC;? (basically a stamp which they use on your GPXGNQRG VQ TGVWTP VJG EGTVKĆ&#x201A;ECVG DCEM VQ [QW >>

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

+ JCXG UGXGTG JCGOQRJKNKC V[RG # CPF + HQTOGTN[ JCF an inhibitor, which was treated when I was 15. But, long story short, I am now on prophylaxis and my friends and I TGEGPVN[ FGEKFGF VJCV YG YQWNF NKMG VQ VTCXGN VQ ,CRCP HQT YGGMU QXGT VJG &GEGODGT 0GY ;GCT RGTKQF

17

SAM CONTINUED...

MY PLAN FOR PACKING

I did take one spare treatment with a couple of spare syringes and needles â&#x20AC;&#x153;just in caseâ&#x20AC;?. $WV CNN YCU YGNN MKPF QH O[ CRRNKECVKQP YCU CRRTQXGF CPF + YCU TGCF[ VQ OQXG HQTYCTF YKVJ RNCPPKPI O[ VTKR $WV + JCF to pack a lot of factor. I also had to pack a sharps container and warm clothes, because as you might not know, Japan is in the northern hemisphere, and December/January is actually winter time. #PF YJKNG UQOG OKIJV DG VTCXGNNKPI HQT UMKKPI + YCU UKIJVUGGKPI YKVJ HTKGPFU 5Q + JCF VQ Ć&#x201A;V CNN QH VJG CDQXG YKVJ LWORGTU NQPI UNGGXG UJKTVU RCPVU CPF LGCPU UECTH RWHH[ snow jacket, thermal cloths, boots (hiking boots) sock and WPFKGU CPF O[ TGIWNCT VQKNGVTKGU HQT YGGMU QH VTCXGN CPF any cords for the electronic items I was going to take as carry-on (psp, phone, camera, Wi-Fi router, power board & RQYGT RNWI EQPXGTVGT

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

0QV CP GCU[ HGCV 0QV GXGP OGPVKQPKPI QPG XGT[ KORQTVCPV factor (pun intended). My factor needs to be refrigerated.

5QOG QH [QW OC[ JCXG UGGP VJG HTKFIGU YJKEJ [QW IGV CV JQVGNUe *QY VJG pJGEMq YCU + IQKPI VQ Ć&#x201A;V CNN VJKU KP C VKP[ HTKFIG YJKNG VTCXGNNKPI!

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9GNN + JCF C RNCP 9JKNG + YCU TGSWKTGF VQ CTTKXG YKVJ O[ HCEVQT RCEMCIGF WR pCU KUq KP VJG GXGPV VJCV KV YCU EJGEMGF + YQWNF CTTKXG CPF TG RCEMCIG KV O[UGNH YJGP + CTTKXGF CV VJG JQVGN QP VJG Ć&#x201A;TUV PKIJV CPF VJTQWIJ UQOG VTKCN CPF GTTQT + HQWPF + EQWNF Ć&#x201A;V KV CNN And the great thing was, as the trip progressed the amount QH HCEVQT CPF GSWKROGPV TGFWEGF GXGP OQTG WPVKN KV YCU CNN IQPG CPF VJG pQJ PQ O[ VTKR KU QXGTq TGCNKV[ JKV DCEM KP CPF

CNN VJG URCEG HQTOCNN[ TGUGTXGF HQT HCEVQT YCU VCMGP WR D[ gifts, toys and other random items.

TRAVELLING AROUND JAPAN

&WTKPI VJKU VTKR O[ HTKGPFU CPF + VTCXGNNGF HTQO 5[FPG[ VQ 6QM[Q VQ *KTQUJKOC VQ 1UCMC VQ 0CICPQ VQ 6QM[Q VQ -[QVQ to Osaka to Mount Fuji to Tokyo back to Sydney.

And while this does look somewhat backwards and HQTYCTFU CPF KV KU YG YGTG VTCXGNNKPI YKVJ QPN[ C TQWIJ RNCP YJKEJ NGHV WU YKVJ UGXGTCN FC[U YJKEJ YGTG EQORNGVGN[ unplanned. I wouldnâ&#x20AC;&#x2122;t recommend this, but we did it anyway, and we decided on and booked these unplanned days roughly half way through our trip, which ended up being an extra day in Osaka, and a trip to Mount Fiji (where we were snowed in by a blizzard but it was a great time all the same).

During this time, we stayed in regular hotels and Ryokans (Traditional Japanese Hotels), and I made sure to check that VJG[ CNN JCF C TGHTKIGTCVQT KP VJGO CPF KP VJG GXGPV + YCUPoV sure, I contacted the hotel and asked.

9JKNG +oO UWTG VJCVoU GPQWIJ VQ OCMG [QW PGXGT YCPV VQ VTCXGN + YKNN UC[ + YGPV DCEM CICKP VJKU [GCT HQNNQYKPI VJG same process, but this time in spring to catch the end of the Cherry Blossoms in April/May for 3 weeks.

9JKNG XGT[ HGY RGQRNG YQWNF UC[ VTCXGNNKPI KU GCU[ YJGP [QW JCXG C DNGGFKPI FKUQTFGT KV KU IQQF VQ MPQY VJCV KV ECP DG done. All it takes is a little bit of planning and preparation!

So donâ&#x20AC;&#x2122;t let it hold you back from exploring the wide world, CPF JCXKPI [QWT QYP CFXGPVWTGU

PLANNING TO TRAVEL? ;QW OC[ DG CUMGF VQ FKUENQUG VJCV [QW JCXG C bleeding disorder and pay a higher premium. Shop CTQWPF VQ Æ&#x201A;PF VJG DGUV EQXGT /CMG UWTG [QW TGCF VJG Æ&#x201A;PG RTKPV CPF MPQY YJCV [QW CTG EQXGTGF HQT and what you arenâ&#x20AC;&#x2122;t (such as riding a motorbike).

Centre as they will be able to help you plan and CFXKUG [QW QP YJCV PGGFU VQ DG FQPG CPF JGNR with the medical documentation required.

Are you travelling soon?

Not sure where to start? Or do you just want to check you have everything you need?

For overseas travel you will need documentation for customs and security.

Visit factoredIn.org.au on what to do and who to talk to.

Talk to your Haemophilia Treatment Centre about VJKU CV NGCUV OQPVJU DGHQTG [QW VTCXGN UQ [QW JCXG plenty of time to prepare.

Factored In has all the most up to date information CDQWV VTCXGNNKPI YJGP [QW JCXG C DNGGFKPI FKUQTFGT - check out the TRAVEL section.

* * Keep in mind that travelling in a developing country can be challenging and many countries donâ&#x20AC;&#x2122;t have haemophilia treatment centres â&#x20AC;&#x201C; and there may be no access to clotting factor.

Are you planning to travel overseas?

Do you know what visa you need?

;QW OKIJV DG UWTRTKUGF VQ NGCTP VJCV VJG NGXGN of care is not the same as what you are used to, QT VJGTG CTG EQUVU KPXQNXGF HQT OGFKECN ECTG +V KU important to talk to your Haemophilia Treatment

+H [QW YCPV OQTG KPHQTOCVKQP JCXG C IQQF NQQM CV VJG #WUVTCNKCP )QXGTPOGPV YGDUKVG smarttraveller.gov.au HQT CFXKEG QP VTCXGNNKPI VQ URGEKÆ&#x201A;E EQWPVTKGU XKUCU KPENWFKPI UVWF[KPI QXGTUGCU CPF VJKPIU VQ CYCTG QH KP VJG EQWPVT[ [QWoTG VTCXGNNKPI VQ

Visit Factored In at www.factoredin.org.au to read the full story of Samâ&#x20AC;&#x2122;s trip to Japan and other youth stories about their travelling experiences.

N a t i o n a l H a e m o p h i l i a N o . 1 9 8 , Ju ne 2017

Donâ&#x20AC;&#x2122;t forget about travel insurance.

19

CALENDAR Haemophilia Awareness Week 8-14 October 2017 Tel: 03 9885 7800 Fax: 03 9885 1800 Email: hfaust@haemophilia.org.au www.haemophilia.org.au 18th Australian & New Zealand Conference on Haemophilia & Rare Bleeding Disorders Pullman Albert Park, Melbourne 12-14 October 2017 Tel: 03 9885 7800 Fax: 03 9885 1800 Email: hfaust@haemophilia.org.au www.haemophilia.org.au World Haemophilia Day 17 April 2018 www.wfh.org/whd XXX111 WFH World Congress, Glasgow, Scotland 20-24 May, 2018 https://www.wfh.org/congress

Haemophilia Foundation #WUVTCNKC *(# XCNWGU VJG KPFKXKFWCNU RJKNCPVJTQRKE VTWUVU CPF EQTRQTCVKQPU YJKEJ JCXG made donations to support GFWECVKQP CEVKXKVKGU CPF peer support programs and Corporate Partners that sponsor programs to enable HFA to: r represent and understand the needs of the community r RTQXKFG GFWECVKQP CPF RGGT UWRRQTV CEVKXKVKGU VQ KPETGCUG independence and the SWCNKV[ QH NKXGU QH RGQRNG YKVJ bleeding disorders, and their families r encourage clinical excellence in haemophilia care, and promote research.

PROBE STUDY UPDATE Some of you participated in the PROBE study phase 2 between September 2016 and February 2017 and we would NKMG VQ VJCPM [QW HQT VCMKPI VJG VKOG VQ EQORNGVG VJG UWTXG[ The multi-national PROBE (Patient Reported Outcomes $WTFGPU CPF 'ZRGTKGPEGU 5VWF[ CKOU VQ IKXG *(# CPF QVJGT haemophilia organisations around the world access to good quality data about the treatment and health experiences of people with bleeding disorders.

HFA is working with the global PROBE team of RCVKGPV CPF CECFGOKE KPXGUVKICVQTU KPENWFKPI /CTM 5MKPPGT former WFH President, and Assoc Prof Alfonso Iorio HTQO /E/CUVGT 7PKXGTUKV[ %CPCFC VQ VGUV VJG TGUGCTEJ methodology in haemophilia and allow people with JCGOQRJKNKC VQ TGRQTV VJGKT JCGOQRJKNKC UGXGTKV[ VTGCVOGPV history and the impact of haemophilia on their daily life.

PHASE 2 Phase 2 of the PROBE study aimed to test: r 9JGVJGT VJG UWTXG[ SWGUVKQPU ECRVWTG EQPUKUVGPV TGURQPUGU KH VJG UWTXG[ KU TGRGCVGF VYKEG KP VJG UCOG #WUVTCNKCP EQOOWPKV[ r 6JG UVCDKNKV[ QH VJG QPNKPG UWTXG[ Australia joined a number of other countries in the Phase 2 reproducibility test, including Canada, Nigeria, Poland, United States and Vietnam. #UUQE 2TQH #NHQPUQ +QTKQoU TGUGCTEJ VGCO CV /E/CUVGT 7PKXGTUKV[ Canada is currently analysing the results from Phase 2. We will report the results in National Haemophilia and on the HFA website later this year.

PHASE 3 2JCUG QH VJG 241$' UVWF[ KU VJG Ć&#x201A;PCN UVCIG QH TQNNKPI QWV VJG study to people with haemophilia around the world, country by country. The work on Phase 3 will commence once Phase 2 has been completed and analysed. Watch this space!

NATIONAL HAEMOPHILIA is a publication of Haemophilia Foundation Australia. Every effort is taken to ensure accurate and relevant VÂ&#x153;Â&#x2DC;Ă&#x152;iÂ&#x2DC;Ă&#x152;] Â&#x2026;Â&#x153;Ă&#x153;iĂ&#x203A;iĂ&#x20AC; Â&#x153;ÂŤÂ&#x2C6;Â&#x2DC;Â&#x2C6;Â&#x153;Â&#x2DC;Ă&#x192; iĂ?ÂŤĂ&#x20AC;iĂ&#x192;Ă&#x192;i` Â&#x2C6;Â&#x2DC; Ć&#x201A;/ " Ć&#x201A; Ć&#x201A; "* Ć&#x201A; `Â&#x153; Â&#x2DC;Â&#x153;Ă&#x152; Â&#x2DC;iViĂ&#x192;Ă&#x192;>Ă&#x20AC;Â&#x2C6;Â?Ă&#x17E; Ă&#x20AC;iyiVĂ&#x152; Ă&#x152;Â&#x2026;Â&#x153;Ă&#x192;i Â&#x153;v Ă&#x152;Â&#x2026;i Â&#x153;Ă&#x2022;Â&#x2DC;`>Ă&#x152;Â&#x2C6;Â&#x153;Â&#x2DC; Â&#x153;Ă&#x20AC; Ă&#x152;Â&#x2026;i i`Â&#x2C6;Ă&#x152;Â&#x153;Ă&#x20AC;] Â&#x2DC;Â&#x153;Ă&#x20AC; Â&#x2C6;Ă&#x192; >Â&#x2DC;Ă&#x17E; Â&#x2C6;Â&#x2DC;vÂ&#x153;Ă&#x20AC;Â&#x201C;>Ă&#x152;Â&#x2C6;Â&#x153;Â&#x2DC; Â&#x2C6;Â&#x2DC;Ă&#x152;iÂ&#x2DC;`i` Ă&#x152;Â&#x153; Ă&#x152;>Â&#x17D;i Ă&#x152;Â&#x2026;i ÂŤÂ?>Vi Â&#x153;v >`Ă&#x203A;Â&#x2C6;Vi vĂ&#x20AC;Â&#x153;Â&#x201C; > ÂľĂ&#x2022;>Â?Â&#x2C6;wi` Â&#x201C;i`Â&#x2C6;V>Â? ÂŤĂ&#x20AC;>VĂ&#x152;Â&#x2C6;Ă&#x152;Â&#x2C6;Â&#x153;Â&#x2DC;iĂ&#x20AC; Â&#x153;Ă&#x20AC; Â&#x2026;i>Â?Ă&#x152;Â&#x2026; ÂŤĂ&#x20AC;Â&#x153;viĂ&#x192;Ă&#x192;Â&#x2C6;Â&#x153;Â&#x2DC;>Â?° Haemophilia Foundation Australia does not endorse or assure the products, programs or services featured in NATIONAL HAEMOPHILIA >Â&#x2DC;` `Â&#x153;iĂ&#x192; Â&#x2DC;Â&#x153;Ă&#x152; Â&#x201C;>Â&#x17D;i Ă&#x192;ÂŤiVÂ&#x2C6;wV Ă&#x20AC;iVÂ&#x153;Â&#x201C;Â&#x201C;iÂ&#x2DC;`>Ă&#x152;Â&#x2C6;Â&#x153;Â&#x2DC;Ă&#x192; vÂ&#x153;Ă&#x20AC; >Â&#x2DC;Ă&#x17E; ÂŤĂ&#x20AC;Â&#x153;`Ă&#x2022;VĂ&#x152;Ă&#x192;] ÂŤĂ&#x20AC;Â&#x153;}Ă&#x20AC;>Â&#x201C;Ă&#x192; Â&#x153;Ă&#x20AC; Ă&#x192;iĂ&#x20AC;Ă&#x203A;Â&#x2C6;ViĂ&#x192;° We welcome reproduction of articles or quotations from NATIONAL HAEMOPHILIA on the understanding that acknowledgement is made of NATIONAL HAEMOPHILIA as the source.

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

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