HaemophiliaNationalHaemophilia Foundation Australia www.haemophilia.org.au

No. 166, June 2009

The Third Red Run Classic was held on Sunday 31 May at New Farm Park in Brisbane.

650 runners and walkers got together to raise money for people with haemophiliaand inherited bleeding disorders. Our third Red Run Classic was a most successfulevent with many more participants than in previous years and promises of evenmore in 2010. HFA thanks all participants, volunteers and our sponsors.

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Haemophilia Foundation AustraliaRegistered No.: A0012245MABN: 89 443 537 1891624 High Street Glen Iris, Victoria, Australia 3146Tel: +61 3 9885 7800Freecall: 1800 807 173Fax: +61 3 9885 1800hfaust@haemophilia.org.auwww.haemophilia.org.auEditor: Sharon Caris

Contents

1 Red Run Classic

3 WFH Musculoskeletal Congress

4 WFH – A History

6 An Historical Note from the President

7 Staying Smart Online

8 15th Australian & NZ HaemophiliaConference

10 New Developments in Research

11 ASHM Conference

12 Hepatitis Awareness Week

13 Hep C Treatment News in the Media

15 New Directions in Hep C Therapy

16 Grass Roots to National ActionNews From AHCDO

17 Staff Changes

18 Thailand – Australia Twinning

19 Global Feast

20 Calendar

(L-R) Liam Fogarty, Jonathan Fogarty (RRC MC), Molly Fogarty, Cr David Hinchliffe, Peter Fogarty (HFQ Treasurer), Natashia Coco (HFA Development Manager), Mitchell Large

Men – 5km

1st - Stuart Bowden (#50) 17:17

2nd - Oscar McPhee (#876) 17:56

3rd - Mark Tasney (#313) 18:22

Men – 10km

1st - Jackson Elliot (#495) 32:01

2nd - Geoff Heydon (#854) 33:20

3rd - Hayden Pickering (#902) 34:58

CONGRATULATIONSTO THE FOLLOWING WINNERS:

Women – 5km

1st - Michelle Woodhouse (289) 21:33

2nd - Tyra Evans (#62) 22:30

3rd - Allison Cresswell (#339)

Women – 10km

1st - Roxie Schmidt (#435) 35:56

2nd - Emily Donker (#929)

3rd - Annette O'Shea (493)

Children

1st Boy – Angus Douglas (#13)

1st Girl – Caitlin Large (#946)

SPONSORSMajorSponsor

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Matthew Stewart is adult haemophilia physiotherapist at the Royal Brisbane and Women’s Hospital, Brisbane, and amember of Australian and New Zealand Physiotherapy Haemophilia Group.

WFH MUSCULOSKELETALCONGRESS

Matthew Stewart

In April I had the privilege oftravelling to Cartagena, Colombia,South America, for the 11thInternational MusculoskeletalCongress of the World Federation ofHemophilia, thanks to a generousgrant from Haemophilia FoundationAustralia and support fromQueensland Health. After 36 hours oftravelling, I arrived at Hilton Cartagenawhere the Congress was held.

This Congress had the largestnumber of attendees of anyMusculoskeletal Congress ever held.Attendees numbered almost 300health professionals representingevery continent of the world andincluded orthopaedic surgeons,physiotherapists, haematologists,physiatrists, podiatrists, researchers andone physical education teacher fromBrazil. As the only representativefrom Australia, I had plenty ofopportunities to meet many leadingclinicians and researchers from manycountries, which afforded me theopportunity to develop relationshipsfor professional support andpotential involvement in internationalwork in the future.

Approximately 100 presentationswere made over the four days of theCongress by clinicians andresearchers. Topics included thehistorical developments inmusculoskeletal management ofpeople with inherited bleedingdisorders, current practices inmusculoskeletal management ofvarious body areas, current researchinitiatives and implications for clinicalpractice, case presentations oninteresting and complex cases andprovocative presentations on futureformidable tasks and directions.

I only began working in theQueensland Haemophilia Centre atthe beginning of 2008 and hearingthese presentations and talking tooverseas professionals was great indeveloping my understanding ofhistorical developments andexpanded my knowledge in day-to-day clinical care. I was also graphicallyexposed to some of the challenges inthe developing world, which makesme grateful for the health infrastructurein Australia and helps me appreciatethe responsibility we have to helpwhere we can overseas. There is alsomuch we can learn as physiotherapistsfrom our colleagues overseas whodeal with significant acute andchronic musculoskeletal problems.

Despite our ‘infrastructure,’ we have a way to go to improve themusculoskeletal care of people withinherited bleeding disorders inAustralia. The Congress reinforced to me the importance of timelyspecialised physiotherapyassessment and intervention in the

prevention and management of jointand muscle damage. It is challengingto see the number of physiotherapistswith dedicated time to care forpeople with inherited bleedingdisorders in other developed nations.In Australia, physiotherapy does notnecessarily have such a significantprofile and we might well improve themusculoskeletal outcomes of peoplewith inherited bleeding disorders ifthey had access to more specialisedmusculoskeletal input.

A whole session of the Congress wasdedicated to the psoas muscle whichcan be very painful and debilitatingand may have significant long termconsequences. The presentationscovered the anatomy and function ofthe psoas, cause of bleeds and thesubsequent diagnosis, managementand rehabilitation. Sexual health wasdiscussed in this context and we werechallenged to view this important areaof life as equal to other domains inthe framework of comprehensive care.

“There is also much we can learn as

physiotherapists from our colleagues

overseas who deal with significant acute

and chronic musculoskeletal problems.”

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1960s:

BEGINNINGS

The World Federation of Hemophilia(WFH) was established in 1963 byFrank Schnabel, a Montrealbusinessman born with severehaemophilia A. His vision was toimprove treatment and care for “thehundreds of thousands ofhaemophiliacs” worldwide through anew international organisation.

From a base of six nationalhaemophilia societies, theFederation grew rapidly. It held worldcongresses every two years andcreated a global network ofhealthcare providers, nationalhaemophilia associations, peoplewith haemophilia and their families.At the 1964 WFH congress inAmsterdam, the structure of the neworganisation was defined with aconstitution and an executive board.

The WFH reached a turning point in1969 when the World HealthOrganization acknowledged theFederation’s growing internationalreputation and established officialrelations. The two bodies beganworking on joint projects.

1970s:

THE WFH EXPANDS ITSACTIVITIES

The WFH introduced theInternational Haemophilia TrainingCentre program in the 1970s, offeringnumerous fellowships and workshopsto medical professionals from thedeveloping world. Thailand was onetarget country; the WFH worked withProfessor Parttraporn Isarangkura topromote progress in nationalhaemophilia care. Under herdirection the Bangkok centre becamea major venue for training on how toprovide maximum treatment benefitswith limited resources.

The 1970s were also the decade ofnew products and opportunities,enabling home treatment and theuse of prophylaxis to preventbleeding – for those who could affordit. Then tragedy struck.

1980s:

AIDS HITS THE HAEMOPHILIACOMMUNITY

The AIDS crisis struck in 1982 and thefollowing year. Dr Bruce Evattpresented data to the WorldCongress in Stockholm connectingHIV infection in haemophilia patientsand plasma-derived treatmentconcentrates. The WFH set up theWorld Haemophilia AIDS Centre withthe Los Angeles Orthopedic Hospitalto provide rapid access to vital

WORLDFEDERATION OF HEMOPHILIA – A HISTORY

The following history is published on the World Federation of Hemophilia website athttp://www.wfh.org/index.asp?lang=EN

Important research was alsopresented by Nathalie Jansenregarding the effect of blood oncartilage in joints. Cartilage undergoesconstant turnover, with healthycartilage being replaced at the samerate as it is removed. Nathalie Jansenhas found the normal replacementpart of the turnover does notrecommence until approximately twoweeks after cartilage has contact withblood. This has importantramifications after a joint bleedparticularly in weight-bearing joints,as well as any joint that has a lot offorce placed across it.

I have begun implementing somechanges in my clinical practice herein Queensland to reflect some of theinformation and skills I learnt. I alsolook forward to sharing theknowledge I gained with otherphysiotherapists through myinvolvement in the Australian andNew Zealand PhysiotherapyHaemophilia Group and sharing withmembers of the inherited bleedingdisorders community at the 15thAustralian & New ZealandHaemophilia Conference in Brisbanein October. May we as clinicians andthe representatives of the communitycontinue to strive to improve accessto ‘All treatment for All’ and may theinherited bleeding disorderscommunity continue to benefit fromthe advances being made around theworld in research and clinical care.

“On World Haemophilia Day, 17 April

2003, the WFH launched the Global

Alliance for Progress (GAP) in

haemophilia.”

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information about the disease. AIDScontracted from HIV-contaminatedtreatment products swept throughthe haemophilia community. Amongthe victims was Frank Schnabel, whodied in 1987. Until the end, hereaffirmed his vision with the words:“We are going to emerge victorious.”

To prevent any recurrence of the AIDStragedy, the WFH set up a system ofinternational groups and activities tomonitor the safety and supply ofhaemophilia treatment products.

1990s:

A DECADE OF CHANGE

Many changes followed the death ofthe WFH’s founder. Businessprofessional Charles Carman waselected President in 1988 andintroduced important managementstructures. A 10-year plan waslaunched in 1992 and the funding basewas broadened with new sponsors.

Brian O’Mahony, an Irish medicallaboratory scientist with severehaemophilia, took over in 1994. Hebrought together the WFH’sExecutive Committee and Council asone body composed equally ofdoctors and people withhaemophilia. A modified constitutionwas adopted in 1996.

Greater access to improved products,self-treatment, and prophylaxisshowed up the stark differencesbetween the developed anddeveloping countries. Under

O’Mahony, the WFH focused itsefforts more on the developing world,with programs that would helpcountries to help themselves.

One major step was the introductionof twinning programs in 1994-95 tolink haemophilia organisations andtreatment centres in developed anddeveloping countries. By 2003, theWFH was helping more than 40 twinsarrange training, workshops and otherskills transfer activities.

Also during the mid-1990s, healthcaredevelopment programs andpublications were expanded toinclude public affairs, data anddemographics, and humanitarian aid.Twinning, humanitarian aid, medicaltraining, data collection and otherprograms continue to grow.

A project in Chile represented theWFH’s first major success in achievingrapid and significant improvement inhaemophilia. The WFH broughttogether what came to be called the“winning coalition.” Industry donatedproducts; the Ministry of Healthestablished a national haemophiliaprogram, a key treater co-ordinatedthe program’s implementation; othersreceived specialised training; and thepatient organisation carried out aneducational and advocacy role. TheWFH served as a catalyst and adviser.The lives of Chilean haemophiliapatients changed dramatically in fiveyears and the “winning coalition”model has been adapted successfullyto other countries.

2000s:

CLOSING THE GAP

On World Haemophilia Day, 17 April2003, the WFH launched the GlobalAlliance for Progress (GAP) inhaemophilia. The 10-year healthdevelopment initiative aims to greatlyincrease the diagnosis and treatmentof people with haemophilia in about20 developing countries. GAP isbuilding on existing WFHhaemophilia care projects in 60developing countries and initiatingnew programs in many more places.

Brian O’Mahony ended his term in2004 and Washington attorney, MarkSkinner, was elected the new WFHPresident. Skinner has had extensiveinvolvement with the bleedingdisorders community, fundraising,and advocacy for improved safetyand supply of blood products. “TheWFH enjoyed tremendous growthunder Brian O’Mahony’s leadership,”says Skinner. “The organisation isnow at a new stage and I’m confidentthat my experience will complementhis work.”

“A project in Chile represented the WFH’s first major

success in achieving rapid and significant improvement in

haemophilia. The WFH brought together what came to be

called the ‘winning coalition.’”

1970

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1990

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2000

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1960

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AN HISTORICALNOTE FROM THEPRESIDENT

The need for patient support andadvocacy has been a feature of thedevelopment of HaemophiliaFoundation Australia. State/Territorybased organisations were formedmore than 50 years ago by parents ofchildren with haemophilia to supporteach other. At that time, serviceswere limited and there were fewtreatment options. In 1979 theHaemophilia Societies of Victoria,New South Wales and SouthAustralia came together to form theAustralian Federation of HaemophiliaSocieties (AFH).

When HIV was identified in USA inpeople with haemophilia in 1983,patient organisations around theworld soon realised the impact thiswould have on their community. InAustralia this led to governmentlobbying for financial support forpeople with medically acquired HIVand for improved haemophiliaservices and support in all States/Territories. By 1985 the haemophiliacommunity was keeping in touch withissues via a monthly newsletter and itwas understood there was a clearneed for solidarity and collaboration.In 1986 AFH became incorporated as

Haemophilia Foundation of Australiaand the organisation was joined byHaemophilia Society of Queensland,soon followed by societies in ACT,Western Australia and some time later by Tasmania and the HunterValley in NSW.

HFA has operated for 30 years with abroad program of advocacy,education and research activities toimprove care and treatment forpeople with haemophilia, vonWillebrand disorder and otherrelated bleeding disorders and theirfamilies. This work involvescollaboration with individualsaffected by bleeding disorders andtheir families who are usually, but notalways, members of State/Territoryfoundations and a network ofvolunteers. Our work with our membersand specialist health professionalsand our relationships with a range ofservice providers and funding bodiesin the government and not for profitsector is critical to improving careand treatment for our community.

HFA needs to keep on top of thechanging needs of our community,and be aware of the developmentsaround the world to ensure ourmembers have access to bestpractice care and treatment and theservices to meet their needs. HFA will soon embark on a strategicplanning process to map these needsand how we can best contribute tothe community in Australia andoverseas.

Gavin Finkelstein

“HFA has operated for 30 years with a

broad program of advocacy, education and

research activities.....”

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STAYING SMART ONLINE

Protecting the security of individuals using the internet has become asignificant issue as people in the community increasingly use the internet forsocialising, paying for products and services and managing their finances.

The Department of Broadband, Communications & the Digital Economy haslaunched the Government’s e-security website www.staysmartonline.gov.auwith the aim of educating and changing the behaviours of internet users byraising awareness of e-security issues.

The website is designed to assist allonline users to “stay smart” orunderstand their vulnerabilities andprotect themselves when online. Itincludes easy-to-understand, step-by-step guides covering:

• Computer security issues such ashacking, scams and financialprotection

• Games and safety programs toraise the security awareness ofchildren and young people and withadvice on making friends on the Net

• Information for parents.

For some time HaemophiliaFoundation Australia has had aninterest in providing a safe onlinecommunity for children and youngpeople with bleeding disorders buthas not had the resources to developan online forum. This has led to theestablishment of a partnership andMemorandum of Understanding(MOU) with Livewire, which is theonline community for children andyoung people living with a seriousillness, chronic condition or disabilitydeveloped by Starlight Foundation.The Livewire site is open to thoseaged between 10 and 21 years.Registration to join the community iscarefully vetted, the chat forums aremoderated by trained chat hosts and

Suzanne O’Callaghan is HFA Policy Officer

blogs are overseen by Livewire staff. Information and blogs onbleeding disorders will be managedthrough HFA.

The aim of the MOU is to support thepotential of Livewire for youngpeople with bleeding disorders. HFAand Livewire are currently planningpromotion to children and youngpeople with bleeding disordersbetween 10 and 21 years. Ultimately,if enough young people withbleeding disorders become Livewireusers, there would be regularbleeding-disorder specific chat roomsessions and other activities aimed atyoung people with bleedingdisorders. HFA’s Youth Committeehas contributed to the developmentwork with Livewire and will continueto be involved in the future. Asiblings’ and parents’ site is plannedfor later in 2009.

Suzanne O’Callaghan

“..educating and changing the behaviours of internet

users by raising awareness of e-security issues.”

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• Product Safety

• Living with Hepatitis C andOptions for Treatment andWellbeing

• Living with HIV

• New therapies, new opportunitiesand new challenges for thebleeding disorders community

• Gene therapy

• Treatment product supplyand safety

There is already a list of excellentspeakers from Australia, NewZealand, Canada, United Kingdomand USA and there will be more:

• Dr Tony Allworth, Royal Brisbane& Women's Hospital, Qld

• Jann Anderssen, ArthritisQueensland, Qld

• Dr Chris Barnes, Royal Children'sHospital Melbourne, Vic

• John Berrill, Maurice BlackburnCashman, Vic

• Lorraine Bishop, bleedingdisorders community member,New Zealand

• Dr Paula Bolton-Maggs,Manchester HaemophiliaComprehensive Care CentreUnited Kingdom

• Kelly Brady, Royal Brisbane & Women's Hospital, Qld

• Dr Simon Brown, Royal Children'sHospital, Qld

• Dr Michael Carr-Gregg, highprofile psychologist, Melbourne Vic

• Dr James Daly, Royal HobartHospital, Tas

• Dr Greg Dore, National Centre inHIV Epidemiology & ClinicalResearch, NSW

• Prof Albert Farrugia, PlasmaProtein Therapeutics Association,USA

• Helen Fogarty, bleeding disorderscommunity member, Queensland

• Dr Penelope Foster, MelbourneIVF, Vic

• Janine Furmedge, Royal Children'sHospital Melbourne, Vic

• Dr Brett Halliday, Royal Brisbane & Women's Hospital, Qld

• Dr Kerrod Hallett, Royal Brisbane& Women's Hospital Qld

• Sharon Hawkins, Royal PerthHospital WA

• Dr Ian Hewson, The AlfredMelbourne, Vic

• Anne Jackson, Women’s &Children’s Hospital SA

• Dr David Kandiah, Royal Brisbane& Women's Hospital Qld

• Penny McCarthy, The AlfredMelbourne, Vic

• Leonie Mudge, Royal PrinceAlfred Hospital Sydney, NSW

• Kathy Mulder, Children’s Hospital,Winnipeg, Canada

• Mike O’Reilly, bleeding disorderscommunity member, Qld

• Dr Paul Pun, Princess AlexandraHospital, Qld

The 15th Australian & New Zealand HaemophiliaConference will be held at TheSebel, King George Square,Brisbane from 8-10 October2009.

Planning for the conference is wellunder way. The program will interestpeople with bleeding disorders andtheir families and those providingcare, treatment and services to thebleeding disorders community.

Built around a theme of “LifeChallenges”, the exciting multi-disciplinary program will featurepresentations on current and futureissues affecting people withhaemophilia, von Willebranddisorder and related inheritedbleeding disorders:

• Family Factors: Challenges & Solutions

• von Willebrand Disorder

• Considerations for Couples

• Women’s Health

• Treatment and Management of Inhibitors

• Ageing

• Practical Living (Older Adults)

• Good Joints for a Better Life

• Good Dental Care for People of All Ages

• The Importance ofComprehensive Care for Peoplewith Bleeding Disorders

Natashia Coc

Natashia Coco

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• Margie Rae, Royal Children'sHospital, Qld

• Dr John Rasko, Centenary InstituteNew South Wales

• Dr Jeremy Robertson, RoyalChildren's Hospital Qld

• Katherine Rose, Monash MedicalCentre Melbourne

• Dr John Rowell, Royal Brisbane &Women's Hospital Qld

• A/Prof Jane Smith, Bond UniversityQueensland

• Maureen Spilsbury, Royal Brisbane& Women's Hospital Qld

• Dr Huyen Tran, The AlfredMelbourne

• A/Prof Carla Treloar, University of New South Wales, NSW

• Dr Alison Turner, National BloodAuthority Canberra, ACT

• Deon York, President HFNZ

• Gavin Finkelstein President HFA, WA

For current program information andupdates visit www.haemophilia.org.au.

Welcome and Exhibition Opening

Join us on the Thursday evening atThe Sebel for the Welcome andExhibition Opening and to meet upwith new and old friends.

Gala Dinner ~ Hillstone St Lucia (offsite)

The Gala Dinner will be held atHillstone St Lucia on the Fridayevening. Hillstone is a property of 100acres located 6 km from Brisbane

CBD with stunning views of Brisbane.Transport from The Sebel and returnwill be provided at advertised times,or you can arrange your owntransport. There is plenty of parkingavailable at Hillstone.

Dinner includes ~ canapés, 2 courses(main and dessert) soft drink, beerand wine @ $65 per adult and childrenunder 12 years @ $30 per child.

Dinner tickets must be purchased inadvance - no tickets will be availableduring the conference or at HillstoneSt Lucia on the night. Free seating atthe Dinner.

Remembrance Service ~ Hillstone StLucia (offsite)

The Remembrance Service will beheld at a lovely place at Hillstonebefore the Gala Dinner. This is a timeto come together to think of friendsand family, and the people we havecared for in our community who havedied. The service is non-religious andeveryone is welcome.

Registration

Registrations are now open. Yourregistration can be made online atwww.haemophilia.org.au/conferences or hardcopy forms can bedownloaded.

Registration includes admission toall plenary and concurrentsessions, conference satchel,abstract book, Welcome andExhibition Opening on Thursdayevening, and morning/afternoontea and lunch on Friday andSaturday.

Earlybird registrations close 31 July 2009

EARLY BIRD DRAW

If you book and pay for yourregistration by 31 July you will gointo the draw to win the followingprizes courtesy of BrisbaneMarketing –

1st 2 nights’ accommodation atthe Sebel Citigate valued at$400

2nd 2 nights’ accommodation atthe Sebel Citigate valued at$400

3rd Double pass to climb theBrisbane Story Bridge valuedup to $198

HAEMOPHILIA FOUNDATIONSUBSIDIES

Some Haemophilia Foundationsoffer subsidies to assist people toattend the conference. Weencourage you to explore optionsso that you can join with otherpeople from around Australia andNew Zealand who are alsoaffected by inherited bleedingdisorders to learn more and shareyour experiences. Contact yourlocal foundation.

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Dr Alok Srivastava is WFH Vice-President Communications & Public Policy. This article was published in HemophiliaWorld, April 2009, the journal of World Federation of Hemophilia.

NEW DEVELOPMENTS IN RESEARCHDr Alok Srivastava

Two studies were published recently that highlight exciting newdevelopments for treatinghaemophilia.

Longer Acting Concentrates

Dr Philip Fay and his group fromRochester, New York, USA, have beenworking on developing a more stablefactor VIII protein. Factor proteins arepresent in the blood, but onceactivated, they gradually disappear.The time taken for the activity of aparticular factor to halve is called its“half-life”. The half-life of factor VIII is8-12 hours.

In 2008, Fay and his colleagues firstreported their work (Blood, 2008;112:2761-9), in which they showedthat carefully designed molecularchanges in factor VIII could increasethe stability of both factor VIII and itsactivated form (cofactor VIIIa). Thebenefit of these new moleculeswould mean that factor VIII wouldsurvive longer in the blood, meaningless frequent infusions for patients.

The initial results of in-vitro (in thetest-tube) assessment of the functionof these molecules are promising,

showing a several-fold increase intheir stability. However, more workneeds to be done, including in-vivo(within a living being) studies inanimal models to assess whether theuse of modified molecules leads tothe development of inhibitors and todetermine their efficacy in controllingbleeding. This would be done beforehuman studies can be undertaken.Although there is a long way to go, theprospect of having to use replacementtherapy much less frequently is anextremely attractive option.

Platelet-Delivered Factor VIII

Another new development is thedelivery of factor VIII specifically tothe site of bleeding by platelets. DrRobert Montgomery and his groupfrom Milwaukee, Wisconsin, USA,have discovered a way to do this anddescribed it in a recent paper (Blood2008;112:2713-21).

The Milwaukee group first createdmice that expressed factor VIII in theirplatelets by inserting the factor VIIIgene into haematopoietic stem cells(the source of all blood cells) but witha promoter (a sequence of DNA

required to switch on a gene) that isexpressed only in platelets. Thesegenetically modified stem cells werethen transplanted into haemophilicmice with induced inhibitors.Recipient mice had to receive wholebody irradiation as “conditioning”, aprocess required for these stem cellsto engraft. These stem cells producedplatelets that carried factor VIII inthem. Haemophilic mice with thesetransplanted stem cells survivedclipping of their tails, which is usuallyfatal in such animals.

This is a new approach to managingpatients with inhibitors. The factor VIIIin platelets is protected from beingdestroyed by circulating inhibitors. Inaddition, it is delivered to the exactsite of bleeding by the platelets,which are part of the first response toany bleeding. It also offers a form ofgene therapy for all patients withhaemophilia. Much more work willneed to be done, including studies inlarger animals, to assess the safetyand efficacy of this approach.However, this certainly is a significantdevelopment in the field.

Longer actingconcentrates and platelet-delivered factor VIII forpatients with inhibitors

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The Australasian HIV/AIDS Conference 2009 (21st AnnualASHM Conference) will be held on Wednesday 9September – Friday 11 September 2009 in Brisbane.

The conference brings together a range of Australian andinternational experts with presentations on the latestresearch findings across the spectrum of HIVmanagement. It will include sessions on HIV and hepatitisco-infection.

The four concurrent streams include:

•∑ Understanding and identifying HIV: Basic Science,Biology and Pathogenesis

•∑ Managing HIV: Clinical management and the livedexperience of HIV

•∑ Preventing HIV

•∑ HIV in populations.

Registration is now open. Earlybird registration closesFriday 3 July. Registration deadline is 27 August 2009.Special rates apply for PLWHA or people with hepatitis C.

Further information regarding the conference andprogram can be found at www.hivaidsconference.com.auor contact +61 2 8204 0770.

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World Hepatitis Day is celebratedglobally on 19 May. Once again, thetheme this year was "Am I number12? 1 in 12 people worldwide livewith hepatitis B or hepatitis C."

How is this relevant to people withbleeding disorders affected byhepatitis C? Haemophilia FoundationAustralia (HFA)'s Hepatitis AwarenessWeek Working Group, incollaboration with Hepatitis Australia,developed a local theme specificallyfor the bleeding disorderscommunity:

"I am number 12: I am part of aworldwide community with hepatitisC, but this is my story."

This is about telling the particularstories of those people with bleedingdisorders who have been affected byhepatitis C.

HFA resources

For Hepatitis Awareness Week 2009HFA released:

• Personal stories about living with ableeding disorder and hepatitis C

• Fact sheets on telling people youhave hepatitis C and a bleedingdisorder – at work, and to family,friends and new partners

These resources were launched viathe HFA E-News on 19 May and canbe found in the Hepatitis C section ofthe HFA web site –www.haemophilia.org.au. A printcopy of each of the fact sheets hasbeen included in this copy ofNational Haemophilia and more areavailable from your local HaemophiliaCentre or Haemophilia Foundation.

Suzanne O’Callaghan is Haemophilia Foundation Australia Policy Officer

HEPATITISAWARENESS WEEK -18-24 MAY 2009Suzanne O’Callaghan

How did we decide what resources to develop?

Feedback from the community andhealth professionals in the HFAhepatitis C strategy evaluation(Getting It Right Report) highlightedseveral priority issues:

• Importance of personal stories tofeel connected to other people withbleeding disorders and hepatitis C

• Need for the general community inAustralia to understand the particularstory of people with bleedingdisorders and hepatitis C

• Need for fact sheets with tips onhow to disclose hepatitis C at workand to family/friends/new partners.Information for a health care settingwould also be useful.

State and Territory Foundations askedfor volunteers to write up theirexperiences of living with hepatitis C forthe HFA web site. In response, “Ben”and “Les” (not their real names)produced candid accounts of theirlives and the impact of hepatitis C.

HFA sought and received fundingfrom a philanthropic trust to publishthe stories and the fact sheets to itsweb site and to print the fact sheets.Priority was given to the fact sheetsfor the workplace and for family/friends/partners; the fact sheet on the health care setting is next on the agenda.

Many thanks to all involved:

• “Ben” and “Les” for their personalstories

• The HFA Hepatitis Awareness WeekWorking Group – Dave Bell (HFWA),Robert Lamberth (HFQ), PamelaPunch (HFV), Erin James (HFA YouthCommittee) – for their input, advice,support and their feedback on thefact sheets

• HFA hepatitis C needs assessmentfocus group participants, who gavepermission for their personal storiesto be quoted in the fact sheets

• Sharon Hawkins and Leonie Mudge(Australia/New Zealand HaemophiliaSocial Workers’ and Counsellors’Group) and Penny McCarthy andMegan Walsh (Ronald SawersHaemophilia Centre, The Alfred,Melbourne) who put considerablework into reviewing the fact sheets.

Your feedback

What do you think about thepersonal stories and the fact sheets?Your feedback is very important to usand helps us when we are developingnew resources. If you have anycomments, please:

• Let us know directly (phone 1800807 173 or emailhfaust@haemophilia.org.au)

• Or tell your local HaemophiliaFoundation or haemophilia healthprofessional and ask them to passyour comments on

• Or go to the personal stories/factsheets pages on the HFA web site(www.haemophilia.org.au) and fill inthe online survey.

For more information on the nationalHepatitis Awareness Week campaign,see the Hepatitis Australia web site -www.hepatitisaustralia.com

World Hepatitis Day launch at Federation Square,Melbourne

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Hepatitis Awareness Week (18-24May 2009) provided HaemophiliaFoundation Australia (HFA) with anideal opportunity to raise awarenessabout treatments for people withbleeding disorders who also havehepatitis C.

HFA distributed a media release on15 May (see page 14). The aim was toserve two purposes:

• Update people with bleedingdisorders and hepatitis C who havelost touch with information aboutnew hepatitis C treatments

• Educate the general communityabout the health and treatmentissues for people living with ableeding disorder and hepatitis C

HFA’s hepatitis C needs assessment,the Double Whammy Report,identified a clear need to reachpeople with bleeding disorders andhepatitis C who do not visit theirHaemophilia Centre regularly andmay miss out on the latest newsabout hepatitis C treatments and themessage that they need to reviewtheir liver health regularly. The Reportalso highlighted how little people inthe general community know orunderstand about the experiences of people with bleeding disordersand hepatitis C – which adds toproblems with stigma anddiscrimination and can leave peoplewith bleeding disorders feelingunsupported and isolated.

Suzanne O’Callaghan is Haemophilia Foundation Australia Policy Officer

HEP C TREATMENT NEWS IN THE MEDIA

At the end of April, the majorEuropean hepatitis conferencereleased new data on hepatitis Ctreatments that was very relevant tothe bleeding disorders community.The CHARIOT study, led by AssociateProfessor Stuart Roberts, Director -Gastroenterology and Hepatology,The Alfred hospital in Melbourne,gave a strong message to peoplewith hepatitis C genotype (virus strain)1 to consider treatment before liverdamage develops. Hepatitis Cgenotype 1 is the most commonstrain among people with bleedingdisorders, but has generally had lowersuccess rates for treatment thangenotype 3 – so it is very exciting tofind success rates for people withgenotype 1 and lower levels of liverdisease that are equivalent to thosewith genotype 3.

Retreatment with the current standardtherapy (pegylated interferon/ribavirin) has shown successful resultsfor some people who had earlier lesseffective treatments, such asinterferon monotherapy. For thosewith genotype 1 who have hadunsuccessful treatment with thecurrent standard therapy, there wasthe welcome news that newtreatments in the pipeline areconsiderably more successful. Clinicaltrials studying a triple therapycombination of telaprevir/ribavirin/pegylated interferon are themost advanced of these.

HFA’s media release focussed on thisnews, with expert advice from AssocProf Roberts and input on thebackground issues from GavinFinkelstein, HFA President. Kevin Fisher,a member from Victoria, generouslyoffered to tell the story of his recent

Suzanne O’Callaghan

treatment experiences and theimpact hepatitis C has had on his life.

The message is an important one: asGavin Finkelstein says, for those whohaven’t been fortunate enough tohave cleared hepatitis C already,”Weencourage them to come forward,have their liver health reviewed andtalk to their hepatitis specialist abouttheir options for hep C treatment -we know it won’t help everyone, butit’s worth knowing where you stand.Life is tough enough withhaemophilia without having to battlewith hep C as well.”

“At the end of April,

the major European

hepatitis conference

released new data

on hepatitis C

treatments that was

very relevant to the

bleeding disorders

community.”

>>

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15 May 2009

Good news about hep C treatmentfor people with haemophilia

Results presented at an internationalconference have given hope of acure for those people in Australiawith bleeding disorders who also livewith hepatitis C.

For people living with long-terminfection with hepatitis C, the resultsof clinical trials of hepatitis Ctreatment presented at the EuropeanAssociation for the Study of the Liver(EASL) Congress in Copenhagen atthe end of April 2009 give welcomenews of higher cure rates. This iseven for those with genotype 1, thecommonest strain of hepatitis Camong people with bleedingdisorders in Australia, but also thehardest to treat.

“Many people with haemophilia inAustralia acquired hepatitis C fromthe blood products they used fortreatment in the days before testingwas available for the virus,” explainsGavin Finkelstein, HaemophiliaFoundation Australia President.“That means they’ve been living withhepatitis C for 20-30 years, withsymptoms such as fatigue, nauseaand liver pain – and that’s on top ofthe joint damage and other effects ofrepeated bleeds from thehaemophilia itself.”

“We think I was actually infected wayback in 1978, when I startedtreatment with a plasma concentratepooled from many donors,” saysKevin Fisher, who has haemophilia,“but I didn’t find out until 1990 afterhepatitis C testing became available.Back then I was told by a specialistthat I probably only had 20 yearsahead of me because there was notreatment at that stage. I had aresponsible job in a major Australiancompany and the hep C symptomsmade it hard to do my work – I had togive up my social life and lookingafter things at home and slept all

weekend, just so that I could go backinto work on Monday.”

“The concern for those who have thisliver infection is the possibility ofserious liver damage or liver failureover time – including those withbleeding disorders who have long-term infection, which can increase therisk of liver damage,” explainsAssociate Professor Stuart Roberts,Director, Gastroenterology andHepatology at The Alfred hospital inMelbourne. “The good news is thatthe results of treatment continue toimprove – and successful treatmentcan prevent liver failure.”

“You know, I’d got used to the ideathat I was only going to live a shortlife, which was confirmed for mewhen I tried hepatitis C treatment inthe early 90s. It had some difficultside effects and didn’t help,” saysKevin Fisher. “But last year I decidedto have the latest therapy andalthough it had side effects too, it’sbeen successful and I’ve cleared thehepatitis C virus. I’d given up hopebut now I feel better than I have foryears. My wife and I have just had ourfirst real holiday in several years andit’s been great.”

According to the results of the largeAustralian led, internationalCHARIOT clinical trial presented atthe European Association for theStudy of the Liver Congress inCopenhagen at the end of April 2009,people with genotype 1 hepatitis Cwho receive treatment when theyhave minimal, or no liver damage,have double the chance of a cure,compared to those treated in thelater stages of liver disease. Thestudy included more than 700Australians with hepatitis C and 33Australian hospitals.

“These cure rates are a lot higherthan we thought – up to 7 out of 10people with genotype 1 may be curedif treatment starts before liver scarringor damage has occurred,” says StuartRoberts, who was the lead investigator.

And it’s far from hopeless forpeople who already have some liverdamage or who previously relapsedafter treatment. Some, like Kevin,have recently had successfultreatment or retreatment with thecurrent standard treatment.

The same international conferencealso reported on the new hepatitisC treatments in the pipeline. Acombination treatment of a newdrug telaprevir with pegylatedinterferon and ribavirin is currentlybeing trialled in Australia. At theconference, researchers presenteddata on the US/European armstudying people with genotype 1hepatitis C treated with this tripletherapy. The study found that up to76% people who had previouslyrelapsed achieved a cure with thistreatment.

“This new treatment combinationshows great promise for peoplewith bleeding disorders whorelapsed following previoustreatment,” says Stuart Roberts.

If the clinical trials continue to showsuccessful results the treatmentshould be available in Australianclinics some time after 2010.

“There could be over a thousandpeople with bleeding disorders inAustralia who acquired hepatitis Cvia blood products contaminatedwith hepatitis C ” claims GavinFinkelstein. “Some of them havealready cleared hepatitis C naturallyor through treatment. But for themany others who haven’t been sofortunate, we encourage them tocome forward, have their liverhealth reviewed and talk to theirhepatitis specialist about theiroptions for hep C treatment - weknow it won’t help everyone, but it’sworth knowing where you stand.Life is tough enough withhaemophilia without having tobattle with hep C as well.”

HFA Media Release - Hepatitis Awareness Week (18-24 May 2009)

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Treatment of chronic hep C hasimproved in recent years, particularlysince the advent of pegylatedinterferon (PEG-IFN) and ribavirin (RBV)combination therapy. Depending onHCV genotype, 50-80% of peopleachieve a sustained virologicalresponse following 24-48 weekstherapy. However, treatment numbersremain low, in part due to treatmentside effects and length of therapy.

The development of new therapeuticagents such as protease andpolymerase inhibitors provides hopethat treatment responses will beimproved over shorter treatmentdurations. This is particularlyimportant for people with genotype 1infection. Studies have revealedseveral important features.

1. At least initially, these individualoral therapy agents will becombined with PEG-IFN and RBV.

2. Triple therapy is likely to provideadditional side effects.

3. Early HCV resistance is animportant issue, particularly forprotease inhibitors.

4. Treatment responses should beimproved by at least 15-20%, withshortened treatment durations.

This article was published in The Hep C Review, March 2009 Edition 64, the newsletter of Hepatitis CCouncil of NSW. Professor Greg Dore is Head, Viral Hepatitis Clinical Research Program, National Centre inHIV Epidemiology and Clinical Research.

NEW DIRECTIONS IN HEP C THERAPY

Professor Greg Dore

Two agents, telaprevir and boceprevir(protease inhibitors) have recentlyfinished enrolment into large-scaleinternational phase III trials, withseparate studies in genotype 1patients with, and without, previoustreatment. Results from these trialsshould be available by early 2011.Assuming enhanced treatmentoutcomes and an adequate safetyprofile, these initial proteaseinhibitors should be licensed by 2012with potential access throughMedicare (if demonstrated to becost-effective) in 2013.

Although some agents have beenwithdrawn from development due tosignificant side effects, several otherprotease and polymerase inhibitorsare in clinical development, includingagents that require single dailydosing (telaprevir and boceprevir aredosed three-times daily).

International phase II studies with MK7009 and BI 201335 (proteaseinhibitors) are currently enrolling andwill include several Australianhospitals (including St Vincent’sHospital, Sydney). These trials involvepatients with HCV genotype 1,including those with, and without,treatment experience.

Requirements for study entry forthese and other protease andpolymerase inhibitor trials generallyinclude:

The development of new therapeutic agents such as protease

and polymerase inhibitors provides hope that treatment

responses will be improved over shorter treatment durations.

• chronic hep C

• liver biopsy within the previous 1-2 years, although some studiesare now allowing Fibroscanassessment of disease stage

• no active illicit drug use or alcoholdependence

• no active psychiatric disorder

• no evidence of major chronicmedical conditions

• for treatment-experiencedparticipants, generally a non-response at week 12 or relapsefollowing combination PEG-IFNand RBV is required to bedocumented.

Patients and doctors are “blinded” tothe group to which patients arerandomised, which means that theyare unaware of whether they arereceiving triple therapy, or thestandard combination therapy(generally between one third and onefifth of people receive standardcombination therapy only).

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NEWS FROM AHCDO

“GRASS ROOTSTO NATIONALACTION”:NATIONALHEPATITISHEALTHPROMOTIONCONFERENCE

With the launch of the re-developed AustralianBleeding Disorders Registry (ABDR), the NationalBlood Authority (NBA) has also providedincreased funding for data management. The roleof the data manager is essential for the accurateand timely input of data at the HaemophiliaTreatment Centre (HTC), which in turn means highquality, de-identified national data which can beused to improve treatments and help predictfactor requirements in to the future.

There is now an ABDR data manager at each ofthe 16 HTCs. In order to bring all the datamanagers together to facilitate professionalnetworking, Australian Haemophilia CentreDirectors’ Organisation (AHCDO) has auspicedthe establishment of a Data Managers’ Group(DMG). This will operate in a similar way to thealready existing nurses’ group, physios’ groupand social workers’ group. The firstteleconference was held in April and AHCDOcongratulates Julia Ekert (Royal Children’sHospital, Vic) and Katheryn van Dieman (RoyalAdelaide and Women’s and Children’s Hospitals,SA) who were elected as co-chairs of the DataManagers’ Group. DMG members will now workon developing their Terms of Reference andsome data entry guidelines which will ensure that data is being entered in the same way atevery HTC.

Hepatitis Australia is hosting a two day conference forhealth and community workers with an interest in viralhepatitis prevention and support.

The conference will feature plenary addresses fromhealth promotion experts, health promotion skillsworkshops and presentations on viral hepatitisprevention, education, health maintenance andsupport projects.

It will showcase hepatitis health promotion projectsand strategies used across Australia to engagevarious populations and will explore issues in workingcollaboratively to achieve change. Conferencestreams will include: using new technologies andsocial networking sites; the role of peers; buildingpartnerships; health promotion in prisons, Aboriginaland Torres Strait Islander communities, with youth,CALD communities and people living with hepatitis.

Visit the Hepatitis Australia web site for moreinformation on abstract submission and registration –www.hepatitisaustralia.com

Hobart, 29-30 October 2009

Dr Megan Sarson

Dr Megan Sarson is Project Officer for the AustralianHaemophilia Centre Directors’ Organisation

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STAFF CHANGES

Sharon Caris

Heather is well known for her friendlyand helpful approach. She has veryoften been the first point of contactwhen people call HFA and with herknowledge and sensible approachshe has helped many people toaccess the information or educationmaterials they require, or to makeconnection with others.

Heather is also well known andrespected by many of HFA’sstakeholders, including othercommunity organisations andgovernment officials who HFA workswith to meet its objectives.

Heather’s loyal service to HFA was recognised in 2001 when shereceived the HFA Jennifer RossAward which was established to recognise outstanding service to people with haemophilia and their families.

After 20 years working at HFA,Heather will retire from theorganisation on 16 July. At aninformal presentation during a meetingof the Executive Board in Melbourneon 13 June, HFA President, GavinFinkelstein, presented a small gift inappreciation of Heather’s valuedcontribution and acknowledged herlong service and commitment.

Heather is planning to take a wellearned break, but is unlikely to beidle in her retirement. She said her“immediate plans are to look forwardto some travel, joining the mid-weekwalking group, and increasing myvolunteer work, including workingwith the preps at the local primaryschool “. We have no doubt Heatherwill continue with her many socialactivities and interests with her widecircle of friends and we thank her forher wonderful work at HFA and wishher a very happy retirement.

Heather Lauder started working atHaemophilia Foundation Australia in1989 when the office was based inHartwell. She came to HFA as anExecutive Secretary to the ExecutiveDirector, Jenny Ross. Since that timeHeather has become well known topeople with bleeding disorders andtheir families around Australia and overseas.

“Heather is well known for her

friendly and helpful approach. She

she has very often been the first point

of contact when people call HFA..”

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THAILAND - AUSTRALIA TWINNING

Haemophilia Foundation Australia(HFA), the Thai Patient’s Club (TPC)and National Hemophilia Foundationof Thailand (NHFT) are workingtogether to plan and organise aworkshop in Bangkok in Septemberfor Thai patients and volunteers.

Since an earlier workshop in April2007 a team of volunteers in severalregions of Thailand have beenworking hard to identify patients andfamilies affected by bleedingdisorders and to provide support andinformation to improve access totreatment and care.

The upcoming September workshopwill be attended by patient leadersfrom around Thailand and willprovide an opportunity for thesevolunteers to share their experiencesand learn new skills in advocacy,lobbying and fundraising. After theworkshop Australian representativeswill join with Thai colleagues on aregional outreach visit.

HFA was delighted to host the visit ofMr Nawin Pajakgo and Mr NarongYamnual in September 2008. They areboth members of TPC, and eachhave a child with haemophilia. Thisvisit enabled volunteers and healthprofessionals in South Australia,Queensland and Victoria to learnmore about haemophilia care inThailand and the needs of thebleeding disorders community, andto learn from their experiences ofrunning family and youth camps fortheir members.

The twinning between theorganisations is supported by grantsfrom the World Federation ofHemophilia (WFH).

For more information about WFHTwinning visit the WFH web site atwww.wfh.org.

Sharon Caris is Executive Director at Haemophilia Foundation Australia

Sharon Caris

“The upcoming September workshop

will be attended by patient leaders from

around Thailand and will provide an

opportunity for these volunteers to

share their experiences and learn new

skills in advocacy.”

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Would you like to participate in 2009 Global Feast?

Global Feast is a fundraising opportunity for Australians toraise funds which will be used for people with bleedingdisorders around the world who need our help.

Without proper treatment for their bleeding disorder, mostchildren with severe haemophilia will die when they arevery young. An estimated 400,000 people worldwide areliving with haemophilia. 75% of people with bleedingdisorders throughout the world are undiagnosed anduntreated, particularly in countries where health care is notwell resourced. WFH is striving to close this gap. Australiais one of the fortunate countries where people withbleeding disorders receive high quality care andtreatment. We can all make a difference by working withWorld Federation of Hemophilia (WFH).

Invite your family, friends and work colleagues to a mealand ask them to bring a donation instead of flowers, wineor a gift. If a dinner isn’t your “cup of tea”, any type offestive event will do - a pancake breakfast, pizza party,backyard barbeque, afternoon tea or picnic lunch. Do it athome, or meet in the park! Be creative and have fun! Wecan help you run your own Global Feast event at any timeduring the year!

All monies will be donated directly to WFH. WFH will usethese funds to provide safe and effective blood treatmentproducts free of charge to people in urgent need. WFHworks in more than 50 developing countries providingprograms, services, educating families and training doctorsand nurses in some of the poorest regions of the world.

For more information and promotional items, contactNatashia at HFA on 1800 807 173 orncoco@haemophilia.org.au.

GLOBAL FEAST

“75% of people with bleeding disorders

throughout the world are undiagnosed

and untreated..”

Natashia Coco

NATIONAL HAEMOPHILIA is a publication of Haemophilia Foundation Australia. Every effort is taken to ensure accurate and relevant content,however opinions expressed in NATIONAL HAEMOPHILIA do not necessarily reflect those of the Foundation or the editor, nor is any informationintended to take the place of advice from a qualified medical practitioner or health professional.Haemophilia Foundation Australia does not endorse or assure the products, programs or services featured in NATIONAL HAEMOPHILIA and doesnot make specific recommendations for any products, programs or services.We welcome reproduction of articles or quotations from NATIONAL HAEMOPHILIA on the understanding that acknowledgement is made ofNATIONAL HAEMOPHILIA as the source.Haemophilia Foundation Australia acknowledges the funding and assistance received from the Commonwealth Department of Health and Ageingwhich makes this publication possible.

CALENDAR Corporate

PartnersHaemophilia FoundationAustralia (HFA) values theindividuals, Trusts andCorporations which donatefunds to support ourobjectives.

Among our valued donorsare our Corporate Partnerswho provide unrestrictedgrants to HFA to supportour programs:

National Haemophilia - Electronic Version

Would you prefer to receive National Haemophilia electronically? You would behelping Haemophilia Foundation Australia save on production and postage costs -not to mention the environment. All you need to do is email your details to HFA athfaust@haemophilia.org.au and we will set it up.

WFH Global Forum 2009

Montreal, Canada 24-25 September 2009

email mbrooker@wfh.orgwww.wfh.org

15th Australian & New ZealandHaemophilia Conference

Brisbane 8-11 October 2009

ph 03 9885 7800fax 03 9885 1800email hfaust@haemophilia.org.auwww.haemophilia.org.au

Haemophilia Awareness Week

11-17 October 2009

ph 03 9885 7800fax 03 9885 1800email hfaust@haemophilia.org.auwww.haemophilia.org.au

Hemophilia 2010 World Congress

Buenos Aires, Argentina 10-14 July 2010

ph +1 514 394 2834fax +1 514 875 8916email hemophilia2010@wfh.org