National haemophilia no 197 march 2017

National Haemophilia Fo oundation A Australia Austra

Haemophilia www. ww.haemophilia.o h rg.au No. N o. 19 197 197, 7, M March arch h2 2017 017 01 7

WORLD HEMOPHILIA DAY

2017 | APRIL 17

HEAR THEIR VOICES On World Hemophilia Day let’s come together to show our support for the millions of women and girls affected by bleeding disorders.

CONTENTS 2

Canadian challenge

10

Preventing fear of needles

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From the President

14

Hep C update

4

2017 Conference

16

Hep C treatment personal stories

6

World Haemophilia Day

19

Team.Factor rides again

7

AHCDO update

20

Youth update

8

Family planning and pregnancy

22

Youth News

9

Young women’s project

24

Calendar

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: M.R. Hayata / Sascha Kohlmann / Lambart Photography / Brando Bean

CANADIAN N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

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.

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

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

+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 EQORGVKVKQP YKNN KPXQNXG C UWDUVCPVKCN RTK\G HQT C MyABDR or MyCBDR user in the winning country.

Canada is working quickly to register Canadians with bleeding disorders on MyCBDR so that they can start using the system.

Is Australia up to it? More soon!

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FROM THE

PRESIDENT Gavin Finkelstein

TREATMENT

CONFERENCE

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The upcoming 18th Australian & New Zealand Conference on Haemophilia and Rare Bleeding Disorders will be held in Melbourne 12 -14 October 2017. We are soon to publish the registration brochure so that you can get in early and book your place, and start making your plans for a break in Melbourne.

The NBA consultation is a good opportunity for GXGT[DQF[ VQ UJCTG VJGKT XKGYU ;QW OC[ JCXG DGGP KPXQNXGF KP C ENKPKECN VTKCN YKVJ IQQF TGUWNVU CPF [QW may wish to share the outcomes in a submission. *(# KU ITCVGHWN HQT VJG OCP[ RGQRNG YJQ JCXG UJCTGF their experience of these products either in clinical trials or extension studies to help HFA focus on the important features of our upcoming submission. But you might also prefer to make your own submission.

We encourage you to do so. The consultation closes on Friday 17 March 2017. For more details and to make your own submission go to https://www.blood.gov.au/public-consultation

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It’s a great way to stay in touch with new treatments CPF KORTQXKPI [QWT JGCNVJ CPF IGVVKPI VQ MPQY YJCV is around the corner. Come and join us to meet old friends and make new ones!

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

9G JCXG DGGP KPVGTGUVGF KP C PGY YCXG QH VTGCVOGPV products, and after the Orlando Congress in July 2016 we reported information about extended half life (EHL) RTQFWEVU RTQFWEVU VJCV OKOKE HCEVQT 8+++ CPF GXGP VJCV gene therapy is getting closer and closer to being a TGCNKV[ 5QOG '*. RTQFWEVU JCXG DGGP TGIKUVGTGF HQT use in Australia for more than two years, but they are not funded. Others may be registered soon. HFA has CFXQECVGF HQT VJGUG RTQFWEVU YKVJQWV UWEEGUU VQ FCVG

The Conference theme is Looking Forward to Change and the list of speakers is already looking great.

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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.

CON FER ENCE

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WHO SHOULD ATTEND?

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

The theme for the Conference is “Looking Forward to Change�.

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Chaired by Dr Huyen Tran, the program committee KU FGXGNQRKPI C OWNVKFKUEKRNKPCT[ RTQITCO YJKEJ YKNN KPVGTGUV GXGT[QPG 9G CTG UQQP VQ EQPĆ‚TO UQOG QH QWT local and international speakers. Some of the topics VJG[ YKNN EQXGT KPENWFG r r r r r r r r

new treatments women/girls with bleeding disorders genetic testing XQP 9KNNGDTCPF FKUGCUG rarer bleeding disorders WUKPI FCVC VQ KORTQXG VTGCVOGPV CPF ECTG managing pain DNQQF DQTPG XKTWUGU

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ABSTRACTS AND POSTERS

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.

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See www.haemophilia.org.au/conferences for the abstract submission form and more information. There will be RTK\GU HQT VJG $GUV #DUVTCEV CPF VJG $GUV 2QUVGT

Submit your abstract by Friday 2 June 2017 OTHER FUNCTIONS AND ACTIVITIES ASSOCIATED WITH THE CONFERENCE

The annual meetings of specialist health professionals’ ITQWRU YKNN DG JGNF QP 6JWTUFC[ 1EVQDGT r

Australian Haemophilia Centre Directors’ Organisation

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Australian Haemophilia Nurses Group

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Australian Haemophilia Social Workers’ and Counsellors’ Group

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Australian & New Zealand Physiotherapy Haemophilia Group

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ABDR Data Managers Group.

WELCOME AND EXHIBITION OPENING

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YOUTH

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# 4GOGODTCPEG 5GTXKEG KU C XGT[ URGEKCN VKOG FWTKPI our Conference to remember friends and family, and VJG RGQRNG YG JCXG ECTGF HQT KP QWT EQOOWPKV[ YJQ JCXG FKGF 6JG UGTXKEG KU PQP TGNKIKQWU CPF GXGT[QPG KU YGNEQOG +V YKNN DG JGNF QP (TKFC[ 1EVQDGT DGHQTG the Conference Dinner.

CONFERENCE DINNER

Join us for a relaxing and casual night with other FGNGICVGU HQT VJG FKPPGT QP (TKFC[ 1EVQDGT

(QT OQTG KPHQTOCVKQP CPF FGVCKNU XKUKV www.haemophilia.org.au/conferences.

Registration and Information brochure is included in this edition of National Haemophilia, March 2017.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

Earlybird registrations close 31 July 2017

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WORLD HAEMOPHILIA DAY 2017 '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.

Show your support on the night, and post photos on our Facebook page of you and your friends at the landmark. #WHD2017

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

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In 2017 the theme is HEAR THEIR VOICES. On World Haemophilia Day let’s come together to show our support for the millions of women and girls affected by bleeding disorders.

Keep an eye on our website and Facebook page for information on events and happenings.

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WFH Facebook page www.facebook.com/wfhemophilia

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HFA’s Facebook page - www.facebook.com/ HaemophiliaFoundationAustralia.

HFA will celebrate World Haemophilia Day with the launch of new The Female Factors resources.

LIGHT IT UP RED!

Landmarks and monuments in Australia and around the world will support World Haemophilia Day by changing their lighting to red on April 17.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

Australia has secured support from landmarks and monuments in each State/Territory to light up to red i n April 17 -

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The RED TIE CHALLENGE was created by the National Hemophilia Foundation (NHF) in the United 5VCVGU 0*( UGNGEVGF C 4GF 6KG VQ U[ODQNK\G VJG blood ties that bind our community. Based on the success of NHF, and with their agreement HFA will launch its own Red Tie Challenge to run during April 2017.

HOW DO I PARTICIPATE?

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Wear a Red Tie or Red Scarf (you can download one online from www.haemophilia.org.au/redtie) Get your friends, colleagues and social friends on board Record your look on HFA Facebook or Twitter with hashtag #RedTieChallengeAUS %JCPIG [QWT RTQÆ‚NG RKEVWTG CPF QT RCIG banner on Facebook in support of the Red Tie Challenge.

Make a donation at www.haemophilia.org.au $G ETGCVKXG CPF JCXG HWP For resources and more information visit www.haemophilia.org.au/redtie

Ethiopian Hemophilia Society World Haemophilia Day 2016

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AHCDO UPDATE Megan Sarson #HVGT C [GCT DTGCM + JCXG TGVWTPGF VQ O[ TQNG CV Australian Haemophilia Centre Directors’ Organisation

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The EHS also celebrates World Haemophilia Day

9*& GCEJ #RTKN +P VJGTG YCU C FTKXG VQ RTQOQVG the Blood Bank and encourage donations, whilst in 2016 we held a seminar in Addis Ababa with a theme of encouraging youth. Special awards were made to members who had recently started tertiary education -

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it was hoped that this would encourage younger boys to continue with their education. We were also able to congratulate Friaoli Ayele who was the recipient of a VTCXGN ITCPV VQ CVVGPF VJG 9(* %QPITGUU KP 1TNCPFQ Friaoli was subsequently awarded another grant to attend the WFH Youth Leadership Workshop in $CTEGNQPC JQYGXGT YCU WPCDNG VQ QDVCKP C XKUC KP VKOG There are scarce dollars (or Birr as the local currency is known) to support the work of the EHS so I also WPFGTVQQM UQOG HWPFTCKUKPI YJKNG + YCU VTCXGNNKPI KP VJG 7- /[ JWUDCPF CPF + E[ENGF QXGT MO KP FC[U from Land’s End to John O’Groats - the length of the )TGCV $TKVCKP TCKUKPI QXGT UQOG QH YJKEJ CNUQ went to HFA) which will help EHS with the costs for this year’s World Haemophilia Day celebration.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

+ URGPV OQUV QH O[ VKOG CYC[ KP 'VJKQRKC YJGTG + JCXG been fortunate enough in the past to help establish and work with members of the Ethiopian Hemophilia Society (EHS). Established in 2008 and gaining full membership of the World Federation of Hemophilia (WFH) during the Congress in Melbourne in 2014, the EHS is making ITGCV CFXCPEGU HQT KVU OGODGTUJKR (TQO C DCUG NKPG QH QPN[ JCXKPI HTGUJ HTQ\GP RNCUOC HQT VTGCVOGPV CPF PQV DGKPI CDNG VQ EQPÆ‚TO C ENKPKECN FKCIPQUKU VJG 5QEKGV[ now has some supplies of products supplied through the successful twinning program with the Chapel Hill Hemophilia Treatment Center (USA), has laboratory reagents for testing, maintains a simple database of patients, has regular training workshops facilitated by 9(* CPF JCU QRGPGF EJCRVGTU KP RTQXKPEKCN EKVKGU 6JGTG KU GXGP VCNM QP VJG ITCRGXKPG VJCV VJG IQXGTPOGPV OC[ RTQXKFG HWPFU HQT NKOKVGF RTQRJ[NCZKU UQOGVKOG KP VJG PQV too distant future.

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Clare Waite is the Clinical Nurse Specialist at the Haemophilia Centre, Royal Prince Alfred Hospital, Sydney

FAMILY PLANNING AND PREGNANCY Clare Waite a referral for you to the obstetrics department of the JQURKVCN YJGTG [QWT DCD[ YKNN DG FGNKXGTGF +V KU CNUQ UVTQPIN[ CFXKUGF VJCV [QW FGNKXGT [QWT DCD[ KP C OCLQT JQURKVCN YJKEJ OC[ TGSWKTG [QW VQ VTCXGN VQ [QWT nearest city.

Thinking of starting a family or you or your partner is pregnant? Congratulations, but there are some things you may need to think about and your Haemophilia Treatment Centre is there to assist.

Before the birth Ideally planning for the pregnancy and birth would begin DGHQTG [QW QT [QWT RCTVPGT DGEQOG RTGIPCPV s DWV KH [QW QT [QWT RCTVPGT CTG CNTGCF[ RTGIPCPV FQPoV YQTT[ s [QWT Haemophilia Treatment Centre is there to help you. r

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Genetic counselling is offered at most hospitals and is extremely important. You as a person with haemophilia or VWD or who carries the gene may be CV GCUG YKVJ JCXKPI C EJKNF YKVJ C DNGGFKPI FKUQTFGT DWV [QWT RCTVPGT OC[ PQV QT JCXG NKVVNG WPFGTUVCPFKPI QH YJCV VJKU EQWNF OGCP HQT VJGOUGNXGU CPF VJG EJKNF This is the time for them to learn what it means for VJGO VQ JCXG C EJKNF YJQ JCU JCGOQRJKNKC QT 89& or who is a carrier. Their questions and any fears can be addressed. It is important that both you and your RCTVPGT JCXG C UVTGUU HTGG RTGIPCPE[ UQ KH CP[ CPZKGV[ [QW QT VJG[ OC[ JCXG CTQWPF VJG DNGGFKPI FKUQTFGT can be dealt with early or pre-pregnancy, the better the pregnancy will be.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

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After the birth +ORQTVCPVN[ FQPoV HQTIGV RQUV DKTVJ KH [QW JCXG C EJKNF YKVJ a bleeding disorder, you should become familiar with your RCGFKCVTKE *CGOQRJKNKC 6TGCVOGPV %GPVTG %JKNFTGP NQXG VQ JCXG CEEKFGPVU Be aware the post-natal depression does not only occur in mothers. Fathers may experience it too and it is more EQOOQP KP HCVJGTU YJQ JCXG C EJTQPKE JGCNVJ FKUQTFGT such as haemophilia and VWD. Help is there.

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Make an appointment to see your haematologist and haemophilia nurses and social worker.

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Take some time to think about how you will manage your treatments and care for a newborn.

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# NKVVNG RTGRCTCVKQP IQGU C NQPI YC[ s CPF PQY VQ GPLQ[ the rollercoaster ride which is parenthood!

BE INVOLVED IN HFA’S

YOUNG WOMEN’S PROJECT!

Read drafts and IKXG [QWT ideas

Reply to emails

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WHO CAN BE PART OF THE REVIEW GROUP?

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HFA is currently working on a general resource about bleeding disorders targeted at young women and there CTG QVJGT OQTG URGEKÆ‚E TGUQWTEGU RNCPPGF

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*(# KU NQQMKPI HQT OQTG [QWPI YQOGP TGXKGYGTU YKVJ a range of bleeding disorder experiences to expand our group.

It is not expected to be time consuming

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Reply to emails

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N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

If you are a young woman with a bleeding disorder aged *CXG C DNGGFKPI FKUQTFGT ECTT[ VJG IGPG QT JCXG [GCTU EQPUKFGT LQKPKPI VJG *(# TGXKGY ITQWR VQ JGNR bleeding symptoms FGXGNQR KPHQTOCVKQP TGUQWTEGU HQT [QWPI YQOGP 6JG information will include young women’s personal stories.

WHAT WOULD YOU NEED TO DO?

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Dr Moana Harlen is the Senior Psychologist Haemophilia at the Queensland Haemophilia Centre, Lady Cilento Children’s Hospital, Brisbane

PREVENTING FEAR OF NEEDLES: WHAT CAN PARENTS DO? Moana Harlen

FEAR OF NEEDLES

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Physiological responses within the child’s body: e.g. the stress response is triggered in the part of the brain called the amygdala which is responsible for emotional arousal and sends signals to other parts of the brain so that stress hormones (e.g. adrenaline and cortisol) are released preparing the body to TWP CYC[ VQ UCHGV[ ĆƒKIJV VQ Ć‚IJV QT HTGG\G 6JKPM of the last time you were afraid and how your body responded. Most people notice increased heart rate and breathing and feeling more energised. Vision and hearing become sharper etc. An anxious child will feel pain more acutely than a more relaxed child.

Don’t be surprised if your child wants to go to the toilet or complains of a sore tummy before a needle; that’s part of the stress response.

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How the child feels and thinks: A child may think anxious thoughts such as “This is going to hurt� “People are going to hold me down like last time and + FQPoV NKMG KVq 5WEJ VJQWIJVU ECP EQOG HTQO RTGXKQWU GZRGTKGPEGU QH RCKP CPF FKUVTGUU QT HTQO QXGTJGCTKPI QVJGTU VCNMKPI PGICVKXGN[ CDQWV JCXKPI C PGGFNG QT perhaps they saw someone else become distressed YJGP JCXKPI C PGGFNG 9QTT[ KPETGCUGU HGGNKPIU QH anxiety.

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Whilst at the other end of the spectrum there are VJQUG KPFKXKFWCNU YJQ JCXG CP KPVGPUG KTTCVKQPCN HGCT of needles (needle phobia) and will become extremely CPZKQWU CV VJG OGTG VJQWIJV QH JCXKPI C PGGFNG CPF YKNN FQ CP[VJKPI VQ CXQKF JCXKPI C PGGFNG /QUV EJKNFTGP and adults will sit somewhere between both ends of the spectrum.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

(QT EJKNFTGP YKVJ DNGGFKPI FKUQTFGTU JCXKPI HTGSWGPV needles as home therapy and/or as hospital procedures OC[ KPETGCUG VJGKT EJCPEGU QH JCXKPI VTCWOCVKE PGGFNG experiences where they experience it as painful and highly distressing. Such experiences can increase their EJCPEGU QH FGXGNQRKPI C UVTQPI HGCT QH PGGFNGU YJKEJ can become problematic in managing their bleeding FKUQTFGT 6JG IQQF PGYU KU OQUV EJKNFTGP FQ PQV FGXGNQR this strong fear of needles, although there are still many things that parents can do to increase the likelihood VJCV VJGKT EJKNF YKNN PQV FGXGNQR C PGGFNG RJQDKC CPF VQ increase their resiliency.

10

FEAR IS A NORMAL RESPONSE TO THREAT

Firstly it helps to understand the physiological and psychological mechanisms at play with anxiety around JCXKPI C PGGFNG 9JGP C JWOCPU OKPF RGTEGKXGU UQOG NGXGN QH VJTGCV HTQO VJG GPXKTQPOGPV DG KV TGCN CDQWV VQ JCXG C PGGFNG QT VJGTG KU C ITQYNKPI FQI PGCTD[ QT KOCIKPGF VJKPMKPI CDQWV JCXKPI C PGGFNG QT RKEVWTKPI DGKPI DKVVGP D[ C FQI VJKU YKNN VTKIIGT HGCT YJKEJ KPXQNXGU V[RGU QH TGURQPUGU

HELPING YOUR CHILD TO FEEL SAFE AND SECURE AND TO MANAGE THEIR EMOTIONS

2TGXGPVKQP KU VJG MG[ 6JG OCKP CKO QH VGCEJKPI [QWT EJKNF to regulate their emotions is to increase their sense of control and their sense of safety whilst being accessed.

The idea here is that instead of being a “helpless TGEKRKGPVq VJG[ ECP DG CP pCEVKXG RCTVKEKRCPVq ;QW FQ PQV PGGF VQ YCKV WPVKN [QWT EJKNF KU IQKPI VQ JCXG C RTQEGFWTG or until they become afraid to introduce these strategies

# EJKNF CDQWV VQ JCXG C DWVVGTĆƒ[ PGGFNG could DG QHHGTGF VJG EJQKEG QH YJKEJ XGKP VJG[ RTGHGT or which song would they like to hear or sing. For CFQNGUEGPVU CNNQY VJGO VQ JCXG CU OWEJ control as possible. thingâ€?. Better to say “you might feel a little sting but [QWoNN DG Ć‚PGq

For a child to feel safe and secure they need:

1. To be able to predict what is going to happen. This KU YJ[ RTQXKFKPI EJKNFTGP YKVJ TQWVKPGU KU KORQTVCPV 6JG[ know what is going to happen next based on what they are doing now e.g. after breakfast I brush my teeth and then I can play. This reduces fear of the unknown. r

Making treatment predictable is important for this reason. It helps to keep things the same as much as possible so where, when, who and how treatment is done. This will help your child’s thinking and feeling, G I p+ JCXG O[ HCEVQT DGHQTG QT CHVGT DTGCMHCUVq

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Create steps in treatment that your child knows and they can say what is happening next; make it a fun thing.

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Be honest about what is going to happen if in a hospital setting; prepare them for the procedure.

Best not to say “it won’t hurt� or “you won’t feel a

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%QWPVKPI CPF RWUJKPI VJG PGGFNG QP UQ VJG[ will know when the needle will go in. They can count CU YGNN p1M NGVoU EQWPV VQIGVJGT p

2. Some sense of control over what is going to happen. *CXKPI C UGPUG QH EQPVTQN KU KORQTVCPV HQT children and adults. So offering some choices during treatment where practical, e.g. if a child has a port they could be offered the choice of lying down or sitting up or which toy they would like. If a support person is helping they could ask if the child would like to hold VJGKT JCPF QT TWD VJGKT NGI # EJKNF CDQWV VQ JCXG C DWVVGTĆƒ[ PGGFNG EQWNF DG QHHGTGF VJG EJQKEG QH YJKEJ XGKP VJG[ RTGHGT QT YJKEJ UQPI YQWNF VJG[ NKMG VQ JGCT QT UKPI (QT CFQNGUEGPVU CNNQY VJGO VQ JCXG CU OWEJ control as possible.

3. To have calm parents even when things aren’t quite going to plan. Adults teach children how to manage their emotions by showing and talking about how they manage their own emotions. Adults can often role model being anxious and are not aware

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

[QW YKNN RTQDCDN[ ƂPF [QW CTG CNTGCF[ FQKPI C NQV QH VJGO but it’s nice to know you are on the right track.

11

A word of warning here, do not confuse empathy with sympathy, it is unhelpful to say comments like “you poor thing� or “my poor baby� as this can lead to them feeling sorry HQT VJGOUGNXGU

they are doing so. Therefore it is important for adults VQ CEV ECNO GXGP KH VJG[ FQPoV HGGN KV KPUKFG YJCVGXGT the emotion might be, e.g. anger, anxiety, or sadness.

If a child sees a parent with a worried look on their HCEG VJGP VJG[ YKNN VJKPM VJG[ JCXG UQOGVJKPI VQ YQTT[ CDQWV +V KU 1- VQ UC[ KH [QW CTG PGTXQWU UQ NQPI CU [QW follow up with how you are going to cope. Remember EJKNFTGP NGCTP D[ YCVEJKPI JQY QVJGTU TGCEV $GJCXG VJG YC[ [QW YCPV VJGO VQ DGJCXG UQ MKPF UOKNGU ECNO XQKEGU CPF FQKPI UQOG FGGR DTGCVJKPI [QWTUGNH 4. Distraction strategies. This helps keep a child’s mind occupied so they pay less attention to the PGGFNG 6JKU KU C XGT[ GHHGEVKXG RCKP OCPCIGOGPV strategy. Distraction is best started prior to the access to help keep them relaxed for a longer period of time and used all the way through the procedure until it is CNN QXGT 6JGTG CTG OCP[ FKUVTCEVKQP UVTCVGIKGU UWKVCDNG for different ages.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

For very young babies and toddler

12

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Nursing/holding

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Soother

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Blowing bubbles or party blowers. You can keep this CU C URGEKCN CEVKXKV[ HQT VTGCVOGPV UQ VJG PQXGNV[ VCMGU longer to wear off.

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For older children

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6CNMKPI CPF SWGUVKQPKPI VJGO 9JCVoU VJGKT HCXQWTKVG subject or hobby? Can they count backwards or some simple arithmetic if they like maths.

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Music

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*CPF JGNF ICOGU Ć‚PF KV DQQMU

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)WKFGF KOCIGT[ s KOCIKPKPI C HCXQWTKVG QT JCRR[ place

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Doing deep or tummy breathing

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Being massaged by parent

5. Play therapy s %JKNFTGP NGCTP VJTQWIJ RNC[ CPF RNC[ KU XGT[ VJGTCRGWVKE ;QW ECP DW[ C VGFF[ DGCT CPF sew a pretend port on its chest and this can be used VQ HCOKNKCTKUG [QWT EJKNF YKVJ JCXKPI C RQTV ;QWPI EJKNFTGP NQXG TQNG RNC[U CPF WUKPI VJGKT KOCIKPCVKQP You can use the bear as a role model and pretend to talk to teddy and say how good he is at sitting still. Your EJKNF EQWNF RTGVGPF VQ IKXG VGFF[ VJGKT HCEVQT CPF VCMG teddy through the same steps your child will be going through. The same can be done for any upcoming medical procedures.

6. Emotional support s VJKU KU C DKI QPG +V KU XGT[ XGT[ # PQKU[ KPVGTCEVKXG VQ[ VQ GPEQWTCIG VJGO VQ NQQM CYC[ important to identify and acknowledge how your child is feeling. If you see them upset or afraid, let them 5KPI HCXQWTKVG UQPIU QT OCMG WR C UQPI CDQWV JCXKPI know you understand they are afraid. This helps them factor, e.g. Think of a fun upbeat tune like “you are to become aware of their emotions which is a necessary my sunshine� or the Bingo song and change the step for them to be able to manage emotions. words to something about its factor time again. r A word of warning here, do not confuse empathy with sympathy, it is unhelpful to say comments like 7UG [QWT UOCTV RJQPG VQ RNC[ VJGKT HCXQWTKVG UQPIU QT “you poor thing� or “my poor baby� as this can cartoons as it is easy to hold in front of their face. Again NGCF VQ VJGO HGGNKPI UQTT[ HQT VJGOUGNXGU +V KU OWEJ VJG[ EQWNF JCXG C URGEKCN QPG LWUV HQT VTGCVOGPV VKOG

7. To learn coping strategies s CU EJKNFTGP ITQY older they learn to self-soothe rather than rely on their parents to regulate their emotions. Sometimes they need some extra strategies to increase their coping ability whilst being accessed. Lots of practice is needed for these strategies to become more automatic so the OQTG VJG[ RTCEVKEG KP C HWP YC[ KP FCKN[ CEVKXKVKGU CPF games the easier it will be for them to apply the coping strategies when starting to feel anxious. The point of VJG UVTCVGIKGU KU VQ RTGXGPV VJG CPZKGV[ HTQO IGVVKPI UQ big that they cannot cope.

4GNCZCVKQP UVTCVGIKGU s [QW ECP VGCEJ [QWPI EJKNFTGP relaxation through games like “sleeping tigers “or “statues� so they practice lying still. Older children can WUG IWKFGF KOCIGT[ QT RTQITGUUKXG OWUENG TGNCZCVKQP r

6WOO[ DTGCVJKPI s FGGR DTGCVJKPI JGNRU VQ TGNCZ VJG body or reset the stress response. Young children can learn to take slow deep breaths by blowing bubbles XGT[ UNQYKPI UQ VJG[ FQPoV RQR

7UKPI EQRKPI NCPIWCIG s YJGP EJKNFTGP HGGN UECTGF QT PGTXQWU VJG[ ECP WUG EQRKPI YQTFU VQ JGNR VJGOUGNXGU HGGN DGVVGT %JKNFTGP NGCTP RQUKVKXG UGNH VCNM HTQO YJCV they hear others say to them and about them. r

&WTKPI RTQEGFWTGU VGNN VJGO URGEKĆ‚ECNN[ YJCV VJG[ CTG doing that is helpful and praise them, e.g. “ you are

C DGKPI XGT[ DTCXG TKIJV PQY IQQF LQDq QT p YJCV C great statue you are, lying nice and still for Mummy or Daddy, well done� r

'ZCORNGU QH RQUKVKXG UGNH VCNM QT JGNRHWN VJQWIJVU CTG p+ ECP FQ VJKUq pKV OKIJV JWTV C DKV DWV +oNN DG ƂPGq p + did OK last time�

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For an older child you could mention that you noticed how anxious they were and how proud you were that they did it anyway.

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7UKPI TGYCTFU VQ JGNR [QWT EJKNF CEJKGXG IQCNU (setting limits). Reward charts work well for 4-10 year QNF EJKNFTGP 6JKU RTQXKFGU C PQP RWPKVKXG UVTCVGI[ VQ FGCN YKVJ FKHĆ‚EWNV DGJCXKQWTU FWTKPI VTGCVOGPV

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If a child is not lying still or doing something that is OCMKPI CEEGUU FKHƂEWNV VJGP [QW EQWNF WUG C TGYCTF chart where they can earn stickers each for doing the JGNRHWN DGJCXKQWT 1PEG C EJKNF GCTPU UVKEMGTU HQT VJG week they can get a special reward (doesn’t need to cost money, doing something fun with someone etc.).

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9KVJ [QWPI EJKNFTGP [QW PGGF VQ RTQXKFG VJG TGYCTF KOOGFKCVGN[ CHVGT VJG[ JCXG UJQYP VJG DGJCXKQWT [QW YCPVGF 0GXGT VCMG CYC[ C UVKEMGT QPEG VJG[ JCXG earned it.

These are the many things you can do at home to help your child learn to cope with needle access and to reduce VJG NKMGNKJQQF QH [QWT EJKNF FGXGNQRKPI C PGGFNG RJQDKC +P C JQURKVCN UGVVKPI [QW ECP CFXQECVG HQT [QWT EJKNF KH they are particularly anxious. Talk with your Haemophilia Treatment Centre staff to see if a procedural plan can be tailored so medical staff can minimise distress as much as possible during needle procedures.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

more empowering for a child to hear “I can cope�

OGUUCIGU YJKEJ YKNN JGNR VJGO VQ ITQY WR DGNKGXKPI they can cope with haemophilia. It’s a matter of Ć‚PFKPI VJG DCNCPEG DGVYGGP GORCVJ[ CPF UGVVKPI limits. A matter of fact approach is more helpful, for instance, “I know that you don’t like this and that’s OK

GORCVJ[ DWV [QW JCXG VQ JCXG [QWT HCEVQT UQ VJCV you can run around and play, so remember your job is to help Mummy or Daddy by lying nice and still so we can get it done quickly and easily (setting limits)�.

13

Suzanne O’Callaghan Callaghan is HFA Policy Research and nd Education Manager

C

HEP UPDATE Suzanne O’Callaghan CHANGE YOUR FUTURE

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+V JCU DGGP XGT[ GZEKVKPI VQ JGCT TGRQTVU HTQO community members that they are now cured after r treatment for hepatitis C with the new Direct Acting #PVKXKTCN &## VTGCVOGPVU #HVGT UQ OCP[ [GCTU QH NKXKPI with HCV and, in some cases, unsuccessful attempts at interferon-based treatment, they are now free of the r XKTWU In this issue of National Haemophilia Len and Paul share their personal stories about their treatment experience. They speak about how unlike the old interferon treatments this treatment was for them; and what a difference being cured has made to their life.

WHAT’S STOPPING YOU FROM TREATMENT?

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

In February 2017 the Kirby Institute estimated that 25,890 people had initiated hepatitis C treatment with the new DAAs during March to September 2016, which KU CDQWV QH VJG VQVCN PWODGT QH RGQRNG NKXKPI YKVJ chronic hepatitis C in Australia. The number of people KPKVKCVKPI VTGCVOGPV JCU FGETGCUGF GXGT[ OQPVJ HTQO 5070 in March 2016 to 2,500 in September 2016.1

14

Although you would expect to see a big number of RGQRNG CEEGUUKPI VTGCVOGPV KP VJG Æ‚TUV HGY OQPVJU after waiting so long for the new treatments, the steady reduction in treatment numbers has surprised and concerned Australian hepatitis clinicians and hepatitis organisations. With such large numbers of Australians with hepatitis C still untreated and smaller numbers coming forward for treatment, it remains a public health problem.

Deciding to delay hepatitis C treatment until symptoms of NKXGT FKUGCUG QEEWT KU C RCTVKEWNCT EQPEGTP CPF QPG VJCV JCU CNUQ DGGP TCKUGF KP VJG DNGGFKPI FKUQTFGTU EQOOWPKV[

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.KXGT FKUGCUG YKVJ JGRCVKVKU % ECP CFXCPEG UKNGPVN[ CPF RGQRNG OC[ PQV DG CYCTG VJCV VJG[ CTG FGXGNQRKPI CFXCPEGF NKXGT FKUGCUG UWEJ CU EKTTJQUKU QT NKXGT ECPEGT 6TGCVKPI JGRCVKVKU % DGHQTG [QW FGXGNQR EKTTJQUKU WUWCNN[ OGCPU C UJQTVGT EQWTUG QH VTGCVOGPV CPF XGT[ high success rates +V ECP DG JCTFGT VQ VTGCV JGRCVKVKU % KH [QW JCXG CFXCPEGF NKXGT FKUGCUG +H [QW FGXGNQR EKTTJQUKU CPF JCXG UWEEGUUHWN VTGCVOGPV [QW YKNN UVKNN PGGF VQ JCXG NKXGT JGCNVJ EJGEMU TGIWNCTN[ VQ EJGEM [QWT NKXGT JGCNVJ CPF MGGR CP G[G QWV HQT UKIPU QH CFXCPEKPI NKXGT FKUGCUG QT EQORNKECVKQPU VJCV ECP DG managed.

As you can see in the personal stories of hepatitis C treatment published in National Haemophilia QXGT the last year, people with bleeding disorders and JGRCVKVKU % YJQ JCXG EKTTJQUKU JCXG DGGP VTGCVGF successfully and painlessly for their hepatitis C with VJG PGY &##U 0GXGTVJGNGUU JCXKPI VJG QRRQTVWPKV[ VQ EWTG VJGKT JGRCVKVKU % DGHQTG VJG[ FGXGNQRGF EKTTJQUKU YQWNF JCXG DGGP RTGHGTCDNG &CXKF YJQ VQNF JKU JGRCVKVKU % VTGCVOGPV UVQT[ KP the June 2016 National Haemophilia, explained that JG YCU PQV FKCIPQUGF YKVJ JGRCVKVKU % WPVKN VQ years after he acquired it, by which time he already JCF EKTTJQUKU +H JG JCF MPQYP GCTNKGT JG YQWNF JCXG tried treatment much earlier. Others had tried the old interferon treatments but they were unsuccessful and VJG[ JCXG URGPV [GCTU YQTT[KPI CDQWV VJGKT NKXGT JGCNVJ YJKNG YCKVKPI HQT PGY VTGCVOGPV QRVKQPU 6JG XGT[ JKIJ success rates and few or no side-effects of the new VTGCVOGPVU JCU DGGP TGXQNWVKQPCT[ &CXKFoU OGUUCIG CDQWV VJG PGY VTGCVOGPVU KU UJQTV CPF VQ VJG RQKPV p5Q KH [QW JCXG JGR % VCMG ECTG QH KV &QPoV YCKV q

Change your future today!

+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.

WHAT’S NEXT?

#U QH ,CPWCT[ &## VTGCVOGPVU CXCKNCDNG QP VJG 2$5 CTG r

Harvoni® UQHQUDWXKT YKVJ NGFKRCUXKT

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Sovaldi® UQHQUDWXKT

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Daklinza® FCENCVCUXKT

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Viekira Pak® QODKVCUXKT RCTKVCRTGXKT TKVQPCXKT FCUCDWXKT VCDNGVU YKVJ QT YKVJQWV TKDCXKTKP

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Zepatier® ITC\QRTGXKT YKVJ GNDCUXKT

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Ibavyr® TKDCXKTKP

Some are used in combination with each other. Some combinations are once-daily tablets. +P 0QXGODGT VYQ PGY EQODKPCVKQPU YGPV DGHQTG VJG 2JCTOCEGWVKECN $GPGÆ‚VU #FXKUQT[ %QOOKVVGG 2$#% VQ DG CRRTQXGF HQT VJG 2$5 r

Technivie® RCTKVCRTGXKT TKVQPCXKT QODKVCUXKT s HQT VJG treatment of HCV genotype 4

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Epclusa® XGNRCVCUXKT UQHQUDWXKT s YKVJ QT YKVJQWV TKDCXKTKP s HQT VJG VTGCVOGPV QH *%8 IGPQV[RGU

2$#% TGEQOOGPFGF VJCV DQVJ 6GEJPKXKG CPF 'RENWUC IQ VQ VJG #WUVTCNKCP )QXGTPOGPV /KPKUVGT HQT *GCNVJ who will consider pricing matters, negotiate with the pharmaceutical companies and make a decision about funding the new medications to go on the PBS. +PETGCUKPIN[ VJG HQEWU QH PGY VTGCVOGPV FGXGNQROGPV has been on higher cure rates (90-100%), minimal or no side-effects, simple treatment regimens (eg, once-daily tablets), and increasing the range of treatments so that VJGTG CTG VTGCVOGPV QRVKQPU HQT VJG XCTKGV[ QH IGPQV[RGU CPF HQT VJQUG YJQ JCXG JCF WPUWEEGUUHWN VTGCVOGPV YKVJ QVJGT &##U %NKPKECN VTKCNU JCXG EQPUKFGTGF UCHGV[ CPF GHHGEVKXGPGUU KP RGQRNG YKVJ EKTTJQUKU *+8 *%8 EQ KPHGEVKQP CPF MKFPG[ FKUGCUG 5QOG UWEJ CU *CTXQPK CPF <GRCVKGT JCXG CNUQ DGGP VTKCNNGF KP RGQRNG YKVJ DNGGFKPI disorders, showing high cure rates, good safety, few side effects and did not affect bleeding disorder-related bleeding or management of the underlying bleeding disorder. More treatments are currently in the pipeline.

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

With the range and success of the new treatments CXCKNCDNG VJKU KU Æ&#x201A;PCNN[ NQQMKPI NKMG C VCTIGV YG ECP TGCEJ REFERENCES 1.The Kirby Institute, UNSW Sydney. Monitoring hepatitis C treatment uptake in #WUVTCNKC (GDTWCT[ JVVR MKTD[ WPUY GFW CW TGUGCTEJ RTQITCOU XJETR newsletters > 5VGFOCP %# *[NCPF 4* &KPI : 1PEG FCKN[ NGFKRCUXKT UQHQUDWXKT Æ&#x201A;ZGF FQUG EQODKPCVKQP YKVJ TKDCXKTKP KP RCVKGPVU YKVJ KPJGTKVGF DNGGFKPI FKUQTFGTU CPF JGRCVKVKU % IGPQV[RG KPHGEVKQP *CGOQRJKNKC #WI FQK hae.12791 *G\QFG % %QNQODQ / 5RGPINGT 7 GV CN % '&)' +$.& 'HÆ&#x201A;ECE[ CPF UCHGV[ QH GNDCUXKT ITC\QRTGXKT KP RCVKGPVU YKVJ EJTQPKE JGRCVKVKU E XKTWU KPHGEVKQP CPF KPJGTKVGF DNQQF FKUQTFGTU 2TGUGPVCVKQP CV 6JG +PVGTPCVKQPCN .KXGT %QPITGUUv '#5.

'WTQRGCP #UUQEKCVKQP HQT VJG 5VWF[ QH VJG .KXGT $CTEGNQPC 5RCKP #RTKN

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

*(# KU MGGP VQ GPUWTG VJCV GXGT[ #WUVTCNKCP YKVJ C bleeding disorder and hepatitis C has the opportunity VQ JCXG VTGCVOGPV CU UQQP CU RQUUKDNG *QYGXGT YG CTG CYCTG VJCV UQOG RGQRNG GZRGTKGPEG DCTTKGTU RTGXGPVKPI them from accessing the new treatments.

15

HEP C TREATMENT â&#x20AC;&#x201C; â&#x20AC;&#x153;JUST DO ITâ&#x20AC;?

HEP C TREATMENT

â&#x20AC;&#x201C; â&#x20AC;&#x153;JUST DO ITâ&#x20AC;?

Many people with bleeding disorders who started a course of the new hepatitis C treatments in March or April 2016 JCXG PQY HQWPF QWV YJGVJGT VJKU TQWPF QH treatment cured their hep C or not.

What has the new treatment been like for them?

Lenâ&#x20AC;&#x2122; s STORY

Len Minty has moderate haemophilia and had chronic JGRCVKVKU % WPVKN JG YCU EWTGF VJKU [GCT *G GUVKOCVGU VJCV JG YCU NKXKPI YKVJ JGRCVKVKU % HQT [GCTU *GTG JG VGNNU JKU story about hepatitis C and the very different experience he has had with the new direct acting antiviral (DAA) VTGCVOGPV THE FATIGUE CYCLE

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

(QT [GCTU VJG RGTGPPKCN UJCFQYU QH NQY NGXGN PCWUGC NQY NGXGNU QH GPGTI[ CPF DTCKP HQI JCXG HQNNQYGF OG constantly. Frequently they conspired and sucked the energy, both physical and emotional, out of my being VQ VJG GZVGPV VJCV VJG YKNN VQ EQORNGVG VCUMU QT GXGP VQ commence them was brittle. Relationships with partner, family and close friends were compromised.

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(TQO VJG XGT[ DGIKPPKPI QH VJG FKUGCUG + TGUQNXGF VQ DG â&#x20AC;&#x153;normalâ&#x20AC;?. My long established commitment to physical CEVKXKVKGU CU C EQWPVGT VQ VJG RQUUKDNG FGDKNKVCVKPI GHHGEVU of bleeds - such things as swimming, running, cycling and orienteering - I intended to maintain.

And I did.

I would push myself through the nausea and lassitude HQT VJG Ć&#x201A;TUV OKPWVGU QH C TWP QT E[ENG MPQYKPI VJCV after those 8-10 minutes the dopamine would begin Ć&#x192;QYKPI VJTQWIJ O[ DQF[ CPF UWUVCKP OG HQT MO QH running or 45-50 km of cycling. Iâ&#x20AC;&#x2122;d pay a price later with an afternoon crash or siesta, which would be followed by the return of the aforesaid nausea etc.

INTERFERON TREATMENT

In 1992 I took part in the nationwide trials of using interferon as a treatment. I drew the short straw and was QP WPKVU VKOGU C YGGM YJKEJ YCU VCPVCOQWPV VQ JCXKPI VJTGG UJQTV DQWVU QH Ć&#x192;W GCEJ YGGM In consultation with my then gastroenterologist, we soon found that the interferon treatment which was UQ FGOCPFKPI YCU UWRRTGUUKPI VJG XKTCN CEVKXKV[ UQ + EQPVKPWGF QP KV HQT VJG PGZV [GCTU 'XGPVWCNN[ KV DGECOG CRRCTGPV VJCV VJG NKVVNG PCUV[ JCF NGCTPGF VQ NKXG with the interferon, so I came off it in 2006.

I was thrown back on my own defences until 2009.

Then it was that I went on to a dual treatment of interferon CPF TKDCXKTKP 6JKU YCU VJG DGIKPPKPI QH YGGMU QH FCKN[ JQTTQT PCWUGC NQY GPGTI[ NGXGNU KPGTVKC JGCFCEJGU OQWVJ WNEGTU J[RGTUGPUKVKXKV[ VQ HCXQWTKVG HQQFU especially curries and spicy foods. And depression. It was during these sixty two weeks that both my daughters married. I was at the weddings but I wasnâ&#x20AC;&#x2122;t.

THE NEW TREATMENTS

After coming off this regimen, there was talk. Much talk. /WEJ RTQOKUG QH PGY &KTGEV #EVKPI #PVKXKTCNU #NYC[U being promised. Soon. Frustration. Disappointment.

Desperation.

7PVKN 6WGUFC[ /CTEJ #V RO + VQQM O[ Ć&#x201A;TUV FQUGU QH 5QXCNFKÂ&#x160; CPF &CMNKP\CÂ&#x160; $[ RO QP VJCV UCOG FC[ + RGTEGKXGF C HQI NKHVKPI there returned a clarity of thinking that I had forgotten I once had.

On Friday 11th March, I felt a strength and power on the bike that I had not experienced for years. It was EXHILARATING.

Len with his one of his grandkids

The side effects? Nil. *QY FKHĆ&#x201A;EWNV VQ VCMG! Pop them in your mouth at the same time each day and wash down with a glass of water.

5KPEG UVCTVKPI VTGCVOGPV QP KPVGTHGTQP KP + JCXG JCF TGIWNCT EJGEM WRU GXGT[ OQPVJ QT EQWRNG QH OQPVJU YKVJ my gastroenterologist, and since 2006 regular ultrasound and blood tests. +P GCTNKGT FC[U + JCF DKQRUKGU CPF OQTG NCVGN[ Ć&#x201A;DTQUECPU With the six monthly consultations with my gastroenterologist, I had all that was necessary in the form of blood tests and ultrasounds and scans and was ready to commence the DAA treatment.

9JGP + Ć&#x201A;TUV FTCHVGF VJKU CEEQWPV QH O[ GZRGTKGPEG YKVJ VJG PGY JGR % VTGCVOGPVU + JCF PQV [GV JCF O[ Ć&#x201A;PCN TGUWNVU DWV + YCU EQPĆ&#x201A;FGPV HTQO CNOQUV VJG DGIKPPKPI that I would be cured. Three blood tests during the 24 weeks of treatment (I needed 24 weeks as I had cirrhosis) all came back â&#x20AC;&#x153;Virus not detectedâ&#x20AC;?.

9JCV YQWNF VJG WNVKOCVG VGUV FQPG VYGNXG YGGMU CHVGT treatment ceased say?????

6JGUG YGTG V Y G N X G NQPI YGGMU + YCKVGF GZRGEVCPVN[ + YCKVGF YKVJ HTWUVTCVKQP + YCKVGF EQPĆ&#x201A;FGPVN[ 9J[ FKF + JCXG VQ YCKV UQ NQPI YJGP + MPGY UKE VJG TGUWNV! Thursday December 8th. I was handed the printout of results by my gastroenterologistâ&#x20AC;&#x2122;s assistant. The three YQTFU + MPGY YQWNF DG VJGTG YGTG VJGTG VIRUS NOT DETECTED

I was cured!!!!

The new DAAs are pain free, side effects free and they worked for me. +H [QW JCXG JGR % CPF CTG JGUKVCVKPI FKVJGTKPI QT delaying, hesitate, dither and delay no longer. Just go CJGCF CPF CU VJG CF UC[U ,WUV &Q +V

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

6JKU GPGTI[ Ć&#x201A;NNGF GZRGTKGPEG JCU EQPVKPWGF GXGT UKPEG 6JQWIJ PQV ENKPKECNN[ EWTGF WPVKN &GEGODGT + DGNKGXGF + was from the beginning.

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Paulâ&#x20AC;&#x2122; s STORY 2CWN YCU FKCIPQUGF YKVJ JGRCVKVKU % CU C VGGPCIGT #HVGT VTGCVOGPV YKVJ VJG PGY &##U JG JCU Ć&#x201A;PCNN[ DGGP EWTGF *G VCNMGF YKVJ *(# CDQWV JKU VTGCVOGPV GZRGTKGPEGU Originally I was diagnosed with hep C when I was 15 and at that stage the doctors didnâ&#x20AC;&#x2122;t seem to think it was a big FGCN s KV YCU LWUV UQOGVJKPI VJCV ECOG CNQPI YKVJ JCXKPI haemophilia. It didnâ&#x20AC;&#x2122;t really become an issue until I had GNGXCVGF NKXGT HWPEVKQP VGUV TGUWNVU MANAGING INTERFERON TREATMENT

Prior to the new DAAs I had two lots of the treatments VJCV YGTG CXCKNCDNG CV VJG VKOG Ć&#x201A;TUV KPVGTHGTQP CPF TKDCXKTKP CPF VJGP 2')[NCVGF KPVGTHGTQP CPF TKDCXKTKP Both times I was on the treatment for about 6 months but YCU VCMGP QHH DGECWUG + FKFPoV JCXG C TGURQPUG 6JG Ć&#x201A;TUV treatment wasnâ&#x20AC;&#x2122;t so bad, but with the second treatment, there were mental side-effects with depression which was TGCNN[ FKHĆ&#x201A;EWNV VQ FGCN YKVJ 0QV IQQF UVWHH + GPFGF WR JCXKPI EQWPUGNNKPI VQ OCPCIG KV 'XGP YJGP + YCUPoV QP VTGCVOGPV NKXKPI YKVJ JGR % OGCPV I had symptoms like tiredness, and some days I would just HGGN VGTTKDNG +V YCU NKMG + JCF DGGP TWP QXGT D[ C DWU s + had nothing left in the tank. There was also the residue of VJG VTGCVOGPVU CU YGNN #HVGT VJG Ć&#x201A;TUV NQV QH VTGCVOGPV O[ memory wasnâ&#x20AC;&#x2122;t as good as it used to be.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

NEW TREATMENTS

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Before the new treatments went on the PBS, I spent CDQWV VYQ [GCTU YCKVKPI VQ JCXG VTGCVOGPV VJTQWIJ C EQORCUUKQPCVG CEEGUU U[UVGO DWV VQ PQ CXCKN

HEP C TREATMENT â&#x20AC;&#x201C; â&#x20AC;&#x153;JUST DO ITâ&#x20AC;?

FKUEWUU VJG VTGCVOGPV CPF YJCV YCU KPXQNXGF 6JGP I had to wait about a month for the treatment to DGEQOG CXCKNCDNG +V YCU C TGCNN[ UKORNG RTQEGUU CPF XGT[ EQPXGPKGPV VJG ENKPKE UGPV O[ RTGUETKRVKQP VQ VJG JQURKVCN RJCTOCE[ CPF + TCPI VQ EQPĆ&#x201A;TO VJG QTFGT and pick it up. The prescriptions were for 28 days so it was just a matter of calling the hospital pharmacy and making sure I collected the next prescription before VJG RTGXKQWU QPG TCP QWV 6JG QPN[ QVJGT TGSWKTGOGPV YCU VQ JCXG DNQQF VGUVU FQPG CV URGEKĆ&#x201A;GF KPVGTXCNU VQ monitor how the treatment was progressing.

The new treatment was nothing like the interferon VTGCVOGPVU + JCF QPG *CTXQPK Â&#x160; VCDNGV C FC[ GXGT[ OQTPKPI HQT YGGMU (QT VJG Ć&#x201A;TUV VYQ YGGMU + JCF UQOG UKFG GHHGEVU YJKNG O[ DQF[ IQV WUGF VQ KV HCVKIWG C NKVVNG bit of nausea. But after that there was nothing much; life just returned to normal. It didnâ&#x20AC;&#x2122;t affect my work.

While I was on the treatment I also decided not to drink CP[ CNEQJQN 6JKU YCU C RGTUQPCN EJQKEG LWUV VQ IKXG VJG treatment the best chance of doing what it had to do and PQV QXGTNQCFKPI O[ NKXGT + VJKPM KV KU KORQTVCPV VQ VCMG CFXCPVCIG QH VJG PGY VTGCVOGPVU PQY VJCV VJG[ CTG CXCKNCDNG +H CP[QPG JCU JCF GZRGTKGPEG QH VJG RTGXKQWU KPVGTHGTQP VTGCVOGPVU VJGUG are completely different. As I mentioned earlier, I found the new treatment easy to tolerate and it didnâ&#x20AC;&#x2122;t impact on my ability to work.

AND NOW

Once it was announced that the new DAAs had been CRRTQXGF VQ IQ QP VJG 2$5 + JCF O[ PCOG FQYP YKVJ the hepatitis clinic a couple of months before they DGECOG CXCKNCDNG

*CXKPI JCF VJG PGY VTGCVOGPV CPF DGKPI EWTGF JCU CNUQ JCF C DKI KORCEV QP O[ SWCNKV[ QH NKHG CPF KORTQXGF VJG SWCNKV[ QH O[ NGKUWTG CPF RGTUQPCN VKOG + JCXG PQVKEGF QXGT VJG NCUV HGY OQPVJU VJCV + JCXG C NQV OQTG GPGTI[ I used to go to work and then go home and feel really tired, now I get home and tinker about in the shed or YJCVGXGT HQT C EQWRNG QH JQWTU KH + HGGN NKMG KV

The workup for treatment was fairly straightforward. + JCF CNTGCF[ JCF VJG 2%4 VGUV VQ EQPĆ&#x201A;TO VJCV + had hep C and the test for my genotype. I had an appointment with the nurse at the hepatitis clinic to

+H [QW JCXG C DNGGFKPI FKUQTFGT CPF JGRCVKVKU % + VJKPM KV KU KORQTVCPV PQV VQ DG CHTCKF QH VJG PGY VTGCVOGPVU IQ CPF IGV [QWT NKXGT JGCNVJ EJGEMGF VCNM VQ [QWT FQEVQT VCNM VQ QVJGT RGQRNG YJQ JCXG DGGP VJTQWIJ VJG PGY VTGCVOGPVU

TEAM.FACTOR RIDES AGAIN IN 2017!

Team.Factor is led by Dr Simon McRae and Andrew Atkins from the Haemophilia Treatment Centre at the Royal Adelaide Hospital.

The BUPA Challenge Tour was held on Friday 20 January 2017 and allows regular cyclists to ride the same Stage 4 route as the elite cyclists in the Santos Tour Down Under.

In 2017, this was from Norwood to Campbelltown, South Australia, a total of 157.5 kms. â&#x20AC;&#x153;This was the longest BUPA ride yet but possibly one of the most enjoyable,â&#x20AC;? said Andrew Atkins. p1P C RGTHGEV FC[ HQT TKFKPI EQQN CPF ENQWF[ QH WU set off from Norwood for the Bupa Challenge Tour 2017.

Within a few kilometres we were riding uphill, and it seemed much of the ride this year was just that - uphill.

The King of the Mountain ride was thankfully near the start, not the end like last year, and was a gruelling (if short) 15 - 17 degree ascent. A few light and brief showers were a relief, and as usual there were plenty of refuelling stops along the way.

The Adelaide hills are beautiful to ride through and this TQWVG YCU PQ GZEGRVKQP /WEJ QH VJG NCUV MO YCU C UEGPKE FGUEGPV FQYP )QTIG 4F VQ VJG Ć&#x201A;PKUJ 9G CNN TQFG at our own pace with no dramas/incidents, and most of us OCPCIGF VQ Ć&#x201A;PF GCEJ QVJGT CV VJG GPF COQPIUV VJG other riders.â&#x20AC;&#x153; Thank you to the Team.Factor riders - Simon Mcrae, #PFTGY #VMKPU $TCF %NCWUGP 7YG *CJP -QDKG XQP 9KGNNKIJ 'TKEJ XQP 9KGNNKIJ 6JQOCU 8KNLQGP /CTKGVVG Boshoff, Marthinus Boshoff, Alex Nicholson, Dan Drake, %COGTQP %TCOG[ CPF .GQP .CPIGPJQXGP Haemophilia Foundation Australia thanks the team for their mighty effort and to all their supporters who made FQPCVKQPU +VoU PQV VQQ NCVG VQ UWRRQTV 6GCO (CEVQT s XKUKV VJGKT YGD RCIG CV JVVRU IKXG GXGT[FC[JGTQ EQO CW team-factor-bupa-challenge-tour-1.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

(QT VJG Ć&#x201A;HVJ [GCT KP C TQY 6GCO Factor rode in the gruelling 2017 BUPA Challenge Tour to fundraise for VJGKT HCXQWTKVG ECWUG *CGOQRJKNKC Foundation Australia.

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

YOUTH UPDATE Hannah Opeskin

FACTORED IN

(CEVQTGF +P KU C XCNWGF TGUQWTEG HQT VJG #WUVTCNKCP DNGGFKPI FKUQTFGTU [QWVJ EQOOWPKV[ 4GEGPV GXCNWCVKQP HTQO [QWVJ UWIIGUV VJCV [QWPI RGQRNG DGNKGXG VJG YGDUKVG VQ DG C XCNWCDNG VQQN HQT KPHQTOCVKQP TGCFKPI CPF sharing personal stories.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

Factored In is updated regularly - the latest content KPENWFGU

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The Youth Lead Connect weekend held in February 2017

The articles and personal stories written and shared throughout Factored In are generated by youth in the community and the Youth Lead Connect (YLC) participants as they share their experiences being leaders and mentors in the bleeding disorders community. /CP[ CXGPWGU KP VJG EQOOWPKV[ YQTM VQ UWRRQTV Factored In; youth moderators continue to promote the website throughout their local community, and the ;QWVJ 9QTMKPI )TQWR KU KPXQNXGF KP EQPVKPWCN (CEVQTGF +P FGXGNQROGPV D[ IGPGTCVKPI KFGCU HQT PGY EQPVGPV CPF contributing to content.

Sharing stories is a great way of keeping youth connected and is an integral part of Factored In. Become a member and share your story with the community.

I encourage everyone to visit www.factoredin.org.au

Facilitators included the education team from HFA and Dr Moana Harlen, the Senior Haemophilia Psychologist from the Lady Cilento Childrenâ&#x20AC;&#x2122;s Hospital in Brisbane, along with expert youth trainers, 6JG (TCPM 6GCO CPF 4GCEJ 5GUUKQPU EQXGTGF CWVJGPVKE NGCFGTUJKR JQY VQ DG CP GHHGEVKXG OGPVQT boundaries, leading without telling people what to do CPF GHHGEVKXG EQOOWPKECVKQP

The 2017 program began with an initial training weekend KP (GDTWCT[ VQ FGXGNQR NGCFGTUJKR CPF OGPVQTKPI UMKNNU CU YGNN CU KFGPVKH[ OQVKXCVKQPU QH VJG [QWVJ VQ RCTVKEKRCVG in the program.

An important part of the program is the â&#x20AC;&#x2DC;Leadership #EJKGXGOGPV )QCNUo EQORQPGPV CHVGT VJG VTCKPKPI YGGMGPF [QWVJ FGXGNQR n.GCFGTUJKR #EJKGXGOGPV )QCNUo in consultation with their local Haemophilia Foundation, and are required to work through these throughout the next 12 months before graduating from the program.

Youth Lead Connect program process:

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Training weekend

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The participants were asked what qualities they looked for in a leader and the ways in which participants wanted to express their leadership. This made GXGT[QPG KPXQNXGF KP VJG YGGMGPF NQQM OQTG ENQUGN[ CV VJGOUGNXGU CPF YJCV FTQXG VJGO 6JG UGUUKQP YKVJ 4GCEJ NGHV GXGT[QPG VJKPMKPI CDQWV JQY YG YCPVGF to lead people in the community. Participants learnt about communication and ways in which youth leaders could express their leadership skills in the community and help support other young people.

The more personal side to their leadership and mentoring was explored in the hip-hop song-writing session with Australian rapper Mantra. It took the participants down a path of self-expression and GORJCUKUGF VJCV GXGT[QPG GZRGTKGPEGF VJGKT DNGGFKPI FKUQTFGT FKHHGTGPVN[ [GV GXGT[QPG EQWNF TGNCVG 6JG RCTVKEKRCPVU GCEJ YTQVG CP KPFKXKFWCN UQPI CDQWV their experience of their bleeding disorder and VJGP UJCTGF VJGKT UQPI YKVJ GCEJ QVJGT +V YCU C XGT[ TGYCTFKPI UGUUKQP YJKEJ TGXGCNGF C XGT[ UWRRQTVKXG and enthusiastic group of young people committed to being a part of the community As part of the program the youth are required to FGXGNQR C .GCFGTUJKR #EJKGXGOGPV )QCN VQ DG EQORNGVGF QXGT VJG PGZV OQPVJU # IQCN KPENWFGU KPXQNXGOGPV D[ [QWVJ CV C NQECN NGXGN KP C NGCFGTUJKR QT mentoring capacity as well as writing articles for the Factored In website.

TRAINING WEEKEND

In 2017 the Youth Lead Connect program has 6 participants from across Australia, with support during VTCKPKPI HTQO OGPVQTU YJQ JCF DGGP KPXQNXGF KP VJG RTQITCO KP 1PG OGPVQT YJQ JCU DGGP KPXQNXGF in international leadership training programs was also CUMGF DG KPXQNXGF FWTKPI VJG YGGMGPF CPF RTQXKFGF KPXCNWCDNG KPUKIJVU CPF GPEQWTCIGOGPV 9G YGTG really impressed with all the participantsâ&#x20AC;&#x2122; commitment VQ IKXKPI DCEM VQ VJG EQOOWPKV[ VJTQWIJ NGCFGTUJKR and mentoring.

The Youth Lead Connect training weekend was EQPFWEVGF KP (GDTWCT[ KP )NGP 9CXGTNG[

Youth Lead Connect is supported by an unrestricted educational grant from CSL Behring.

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

Youth Lead Connect (YLC) is a leadership program FGXGNQRGF D[ *CGOQRJKNKC (QWPFCVKQP #WUVTCNKC *(# to build education and life skills for young people with bleeding disorders. The program began in 2015 and follows an application pathway similar to a job application process. The program encourages youth to step up in their local community and while increasing both their personal and leadership growth.

21

YOUTH EXPERIENCES FROM THE YOUTH LEAD CONNECT TRAINING WEEKEND THE HIGHLIGHT OF THE TRAINING WEEKEND FOR ME WAS...

“Having a group who started the weekend not knowing what would happen, and who over just 2 short days have been able to look inside themselves and realise how much potential they have. And now this group of young people will be able to give back to the community and hopefully inspire the next generation of leaders within the community.” - Sam “Meeting new people from other states and getting to know them especially their ideas and what they do in their community. The information helped to broaden my mind and reinforced my knowledge about leadership and mentoring.” - Ben

N a t i o n a l H a e m o p h i l i a N o . 1 9 7 , March 20 17

“Meeting other leaders from around Australia and hearing the stories that they want to share.” - Darian

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“The main highlight for me was the REACH program that was organised for us. This was the in-depth relaxation and deep thoughts about ourselves, the way we connect spiritually, emotionally and physically with not only ourselves but with the rest of the group. The whole weekend was spectacular, and I enjoyed the company of all the beautiful people that attended, but by far this experience was my highlight. The exercise really opened up to me and made me look back at the progress in my life that I have uncovered, achieved and made me think about how I have got to where I am today.” - Alan “Meeting new people from the youth community and learning and sharing with them the ways they can become leaders in the community”- Ian

ONE THING I LEARNT FROM THE WEEKEND WAS….

“Anyone and everyone can be involved. You don’t have to think you’re a leader to be a leader. Just by leading by example you have a positive impact on others. And also that we are never alone.

There is a large mixed community of people who are all dealing with the same things, while trying to live their own lives, but who all have valuable experiences which they can share.”

- Sam “There are many people who are really available to help and many other who are determined to create and offer support.”

- Ben “It doesn’t matter how you see yourself, someone else will see something awesome.”

- Hamish “It’s not impossible to be a leader, sometimes you just have to speak up. Other times you just have to help” - Darian

“One small act of kindness can in someone’s eyes make you a leader when you think you might not be” - Andrew “Sharing and caring is what I learned the most.

It’s really important for us each to share our story and encourage younger people in the community to also share their story.”

- Saravana “The hardest part of working to help others is allowing them to see your vulnerability and >ÕÌ i Ì V ÌÞ Ü V LÕ `Ã ÌÀÕÃÌ > ` V w`i Vi°» - Robbie “… how to be a mentor and what it takes to do it.

The individual skills involved being a mentor were taught all across the weekend and how to become better leaders. I thought of it as instead of being a boss, telling individuals what to do, it was a way in which we can show the path to the younger generation to become better members of the organisation. This is where we have boundaries, limitations, objectives and ways to connect with the youth. All in all the weekend was jam packed with knowledge, ideas, skills and means to go about being better leaders in our community.

Becoming a better leader and how to mentor the younger kids in our own community was the one big thing I have learnt this weekend.”

- Alan

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CALENDAR Red Tie Challenge April 2017 www.haemophilia.org.au/redtie World Haemophilia Day 17 April 2017 www.wfh.org/whd Haemophilia Awareness Week 8-14 October 2017 6GN (CZ 'OCKN JHCWUV"JCGOQRJKNKC QTI CW www.haemophilia.org.au 18th Australian & New Zealand Conference on Haemophilia & Rare Bleeding Disorders Pullman Albert Park, Melbourne 12-14 October 2017 6GN (CZ 'OCKN JHCWUV"JCGOQRJKNKC QTI CW www.haemophilia.org.au

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 RTQITCOU VQ GPCDNG *(# VQ 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.

XXX111 WFH World Congress, Glasgow, Scotland 20-24 May, 2018 JVVRU YYY YHJ QTI EQPITGUU

Have you lately?

address

+H [QW JCXG EJCPIGF [QWT GOCKN CFFTGUU KP VJG NCUV [GCT please let us know so that we can update our databases!

Email your name and new email address to hfaust@haemophilia.org.au.

1T RJQPG

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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