WINTER 2008 www.hemophilia.ca VOL 43 NO 1

Canadian Hemophilia SocietyServing the Bleeding Disorders Community

Hem philiaTODAY

CHAPTER SPOTLIGHT • COMMUNITY NEWS • FUNDRAISING • OUR STORIES • THE BLOOD FACTOR

see page 8

Commemorationof Canada’sTainted BloodTragedy

WINTER 2008 • VOL 43 • NO 1

Hemophilia Today625 President Kennedy Avenue, Suite 505Montreal, Quebec H3A 1K2www.hemophilia.caPhone: 514 848-0503Fax: 514 848-9661Toll-free: 1 800 668-2686chs@hemophilia.ca

Hemophilia Today is the official publication of the Canadian HemophiliaSociety (CHS) and appears three times yearly.

The Canadian Hemophilia Society strives to improve the health andquality of life for all people with inherited bleeding disorders and to finda cure. Its vision is a world free from the pain and suffering of inheritedbleeding disorders.

The purpose of Hemophilia Today is to inform the hemophilia andbleeding disorders community about current news and relevant issues.Publications and speakers may freely use the information containedherein, provided a credit line including the volume number of the issue isgiven. Opinions expressed are those of the writers and do not necessarilyreflect the views of the CHS.

The CHS consults medical professionals before distributing anymedical information. However, the CHS does not practice medicine and inno circumstances recommends particular treatments for specificindividuals. In all cases, it is recommended that individuals consult aphysician before pursuing any course of treatment.

Brand names of treatment products are provided for informationonly. They are not an endorsement of a particular product or company bythe writers or editors.

H E M O P H I L I A T O D A Y W I N T E R 2 0 0 82

Canadian Hemophilia SocietyServing the Bleeding Disorders Community

Hem philiaTODAY

www.hemophilia.ca

We would like to thank the followingcompanies, corporate foundations andemployee fund programs for theirgenerous support. Our way of recognizingthem for their generosity is through ourNational Corporate Giving Program.

3M - CanadaCanadian Blood ServicesDelta Hotel WinnipegDe Luca’s Specialty FoodsFondation de Bienfaisance T.A. Germain (La)Great-West Life Assurance CompanyHarold E. Ballard FoundationHéma-QuébecJean Coutu Group (PJC) Inc. (The)John Brouwer Foundation (The)

We would also like to thank our numerous additional donors – individuals, corporations

and foundations – who each year express their confidence in us by making substantial

supporting donations.

Working together with individuals and the corporate sector in Canada helps the CHS

accomplish its mission and vision by extending our reach and reinforcing our messages.

CSL BehringEdwards Charitable Foundation

F.K. Morrow FoundationJ.P. Bickell Foundation

Dewdney Family Charitable Foundation

Lillian and Don Wright Foundation (The)Manitoba Liquor Control CommissionOctapharmaPower Corporation of CanadaPuma CanadaSchering CanadaScotiaBankStandard Limestone QuarriesToronto Star Fresh Air FundWinnipeg Free Press (The)

P L A T I N U M

G O L D

S I L V E R

B R O N Z E

EDITORFrançois Laroche

PRESIDENTPam Wilton, RN

EXECUTIVE DIRECTORDavid Page

EDITORIAL COMMITTEEHélène BourgaizeClare CecchiniFrançois LarocheDavid PageChantal RaymondPatricia Stewart

CONTRIBUTING WRITERSJoyce ArgallHélène BourgaizeSarah BradshawClare CecchiniFrançois LarocheAlex LittleMichel LongPauline MajorDavid PageJuanita PickerlChantal RaymondPatricia StewartCatherine Van Neste, PTEmil WijnkerPam Wilton, RN

PRODUCTION COORDINATORChantal Raymond

GRAPHIC DESIGNPaul Rosenbaum

TRANSLATORSRoy KeysLine LadouceurMarie Préfontaine

F RE E

Wordfromtheeditor

François Laroche

IN THIS ISSUEWINTER 2008 VOL 43 NO 1

H E M O P H I L I A T O D A Y W I N T E R 2 0 0 8 3e d i t o r i a l p a g e s

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what’s going on in the bleeding disorders community, inCanada and abroad.

In Hemophilia Today, you can read all about your Chapter’s recent and upcomingactivities, be touched by personal stories, and learn more about a great variety oftopics such as research that is being conducted to find a cure or to improve thequality of life of those with an inherited bleeding disorder.

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WORD FROM THE EDITOR ........................................3

PRESIDENT’S MESSAGE ............................................4

COMMUNITY NEWSCHS honours volunteers ..............................................5First “tree of life” planted to commemorateCanada’s Tainted Blood Tragedy ................................8CHS releases Report Card on Canada’s BloodSystem ............................................................................10MPTAP Update ..............................................................11Ken Poyser, Member of the Order of Canada ......11Canadian hemophilia nurse coordinatorhonoured (Betty Ann Paradis) ..................................11Chapter Spotlight ........................................................12Upcoming Events ........................................................13What’s new on the CHS Web site? ........................13Notice for the CHS AGM ..........................................13New resources available! ..........................................13

FUNDRAISINGDare to Dream for Hemophilia ................................14Colouring Book - Reminder ......................................15

THE YOUTH FILE ........................................................16

OUR STORIESDiane and Mackenzie: love at first sight..............17

MEDICAL NEWSHepatitis C Press Review ..........................................18Opportunities to participate in research ..............19The Physio Corner – Clinical MentoringProgram ..........................................................................19

THE BLOOD FACTORNews from around the world ..................................20Update to clotting factor concentrates ................20Introduction of Helixate® FS ....................................21

A GLOBAL PERSPECTIVECHS connections: witnessing a miracle ................22

THE FEMALE FACTOR ..............................................23

Commemorationof theTainted Blood

Tragedy

At the moment, recombinant treatment options for Canadians withhemophilia A are either Kogenate® FS (Bayer) or Advate® (Baxter). Thissituation will be changing in the late spring of 2008 when Helixate® FS(CSL Behring) is released in the Canadian market.

First of all, patients must understand that Kogenate and Helixate are identicalproducts that share the same efficacy and safety profiles. While both of theseantihemophilic factors are manufactured at the same plant in Berkeley, California,there are differences in their reconstitution device and packaging. In addition,patients switching to Helixate FS will have to familiarize themselves with a newsystem for logging and transmitting infusion data.

Representatives from both the Canadian Hemophilia Society (CHS) and theAssociation of Hemophilia Clinic Directors of Canada (AHCDC) participated in thetendering process, as sitting members of the Selection Advisory Committee.

Ultimately, Canadian Blood Services and Héma-Québec were responsible fordeciding to include Helixate FS (alongside Baxter’s Advate and Bayer’s Kogenate FS)and for determining the ratio for Bayer and CSL Behring products. Their final deci-sion was based on product quality, security of supply and economics. Under this newagreement, Canadian Blood Services and Héma-Québec hope to achieve combinedsavings in the tens of millions of dollars without compromising the quality of care,thereby alleviating the financial burden placed on our healthcare system.

The new contracts will take effect in April 2008. However, we do not expectHelixate FS to be distributed prior to June 2008 as blood product suppliers and hos-pitals will have to deplete any remaining stocks of Kogenate FS first. Until then, taskforces have been created throughout Canada to ensure a smooth transition fromone product to the other. Each task force is comprised of hemophilia nurses andphysicians as well as one CHS representative. Patient information sessions will beheld in the coming months. (Please read official statements on page 21.)

H E M O P H I L I A T O D A Y W I N T E R 2 0 0 84

President’sMessage

Pam Wilton, RN

F irst, on behalf of the Canadian Hemophilia Society, I want to say “thank you” toCBS for hearing us and for supporting our idea to commemorate Canada’s TaintedBlood Tragedy.

Today, we are planting the very first tree in what we hope will become a smallmemorial forest, stretching across the entire country.

This tree is a powerful symbol.Those who see it in this public place will recognize it as a symbol of hope. Hope for

those Canadians living with HIV and hepatitis C. And hope for those needing a bloodtransfusion.

Those who pass by it on their way into work at CBS will be reminded of the vital workthey do each and every day, and of the trust Canadians place in them to keep our bloodsystem safe and secure.

Those who pause long enough to take comfort in the shade of this tree will have newhope of a future free of the pain and suffering of a bleeding disorder.

Those who admire the strength and beauty of this tree will know that we now have agood blood system—perhaps the best in the whole world. This is evident in the release ofour 2007 Report Card on Canada’s Blood System, with excellent marks for a high priorityon safety and supply.

This tree will not flourish and grow on its own. The Canadian Hemophilia Society andCanadian Blood Services will continue to work together to nourish and protect this tree,symbolizing our promise and commitment to be ever vigilant so that this tragedy cannever, never happen again.

But remember—this is only the first tree of a whole forest. CHS is working with thefederal government to designate October 27 as the annual day for the NationalCommemoration of Canada’s Tainted Blood Tragedy.

Next fall, on October 27, the forest will begin to grow as the federal government willplant a tree and will be joined by Héma-Québec and all of the provincial governments.

Each one of these trees will remind Canadians of the thousands who died as a resultof the tragedy. And each tree will give us new hope.

Hundreds of other trees will be planted in fields, on farms, in gardens, beside riversand in backyards. Trees will be planted in very quiet, very private ways by individuals,families and friends who have lost loved ones.

I would like to acknowledge and thank the many members of the CanadianHemophilia Society who have joined us today along with their very personal memoriesand a new hope.

Thank you.

e d i t o r i a l p a g e s

“This tree will not flourishand grow on its own.The Canadian HemophiliaSociety and CanadianBlood Services willcontinue to work togetherto nourish and protect thistree, symbolizing ourpromise and commitmentto be ever vigilant so thatthis tragedy can never,never happen again.”

On November 26, 2007 at Canadian Blood Services head office in Ottawa,

the Canadian Hemophilia Society launched the Commemoration of the Tainted Blood Tragedy.

The following is the transcript of Pam Wilton’s speech the day of the event.

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CommunityNews

� FRANK SCHNABEL AWARDThis award was initiated to honour the out-standing service of Frank Schnabel, founderof the Canadian Hemophilia Society, for hisvalued role in the growth and development ofthe CHS, the education and care of peoplewith hemophilia, and education of the publicregarding hemophilia needs. The award ispresented in his memory to honour a volun-teer who, over a number of years, has ren-dered distinguished service and noteworthycontributions to the mission and objectives ofthe Canadian Hemophilia Society.

2006 RECIPIENT | Eric StolteEric Stolte has demonstrated exceptional

devotion to the Canadian Hemophilia Societyfor over 20 years, both at thechapter and national levels.He first became involved in1989 when he served asVice President of HemophiliaSaskatchewan, where he wenton to be Chapter President forthe next seven years. Eric’s con-tribution at the national levelhas been outstanding. He hasbeen a member of the CHS

Board of Directors for over 15 years. He hasparticipated on many committees during thistime, including Fundraising, Administrationand Finance, International Development,National Awards, and the ExecutiveCommittee.

Eric served as President of the CHS from2004-2007, providing strong leadership andguidance, particularly in the development ofthe CHS fundraising culture. He has alsobeen a steadfast advocate of supportinghemophilia care around the world, encourag-ing CHS participation in the WorldFederation of Hemophilia (WFH)International Twinning Program. His passionfor engaging in international developmenthas inspired many in the Canadian hemo-

philia community, and as a resultthe CHS is the most activenational organization in WFHtwinning activities for hemophil-ia organizations and treatmentcentres. Eric’s dedication, leader-ship and contributions to themission and vision of theCanadian Hemophilia Societymake him a very worthy recipientof the Frank Schnabel Award.

� INTERNATIONAL CONTRIBUTION AWARDThis award is presented in recognition of avolunteer who, through his/her continuingefforts over a number of years, hascontributed to the development of care andservices for people with bleeding disorders atthe international level.

2006 RECIPIENT | Dr. Man-Chiu PoonDr. Man-Chiu Poon’s contribution to the

improvement of care and treatment for peoplewith hemophilia in China is outstanding. In1993, sponsored by the CHS, Dr. Poon traveledto Tianjin, China, to lead the first hemophiliaworkshop organized in the region by the WFH.Since then, Dr. Poon has devoted his time andskills to improving care for people with hemo-philia in China, serving as a central WFH con-tact person whenever physicians or patients inChina needed information on hemophilia care.

In 1997, a formal WFH twinning wasestablished betweenthe HematologyInstitute in Tianjinand the SouthernAlberta HemophiliaClinic in Calgary. Thesuccess of this proj-ect, thanks in largepart to the dedicatedefforts of Dr. Poon,led the WFH to focuson developing and improving care in China. In2000, the WFH launched a development proj-ect for China with the objective of increasingthe rate of diagnosis of the country’s hemo-philia population as well as training medicalpersonnel in hemophilia treatment. An addi-tional twinning partnership was formedbetween Nanfang Hospital in Guangzhou andthe Ottawa Hemophilia Centre (led by Dr. BrianLuke), and in 2002 Shanghai’s Ruijin Hospitalwas twinned with Calgary and Ottawa jointly.Thanks to these initiatives, China now has aNational Hemophilia Treatment CentreCollaborative Network to coordinate careacross the country.

Dr. Man-Chiu Poon has shown tremen-dous commitment to advancing the care ofpeople with hemophilia in China. In 2005, hedevoted his year-long sabbatical to the twin-ning project, travelling to China to work withtreatment centres and hold medical sym-posia and workshops on hemophilia. He hasmade an immense contribution to hemophil-ia care on the international level, bringingimprovement to the lives of millions of peo-ple with hemophilia in China.

CHS honoursVOLUNTEERS

At the CHS Awards Banquet, heldNovember 24, 2007 in Ottawa, inconjunction with the CHS Semi-Annual Board of Directors Meeting,the CHS recognized a group ofdedicated volunteers, health careproviders, and staff members whohad made a significant contributionto the bleeding disorders communityin 2006 or during preceding years.

Eric Stolte receives his awardfrom Pam Wilton, CHS President.

Dr. Man-Chiu Poon (L)receives his award fromDr. Brian Luke, OttawaHemophilia Centre Director.

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� EXCEPTIONAL SERVICE AWARDThis award is presented in recognition of anindividual or organization who, throughhis/her exceptional service, has contributedto the growth and development of themission of the CHS.

2006 RECIPIENT |Ian DeAbreu

For the lastfive years, IanDeAbreu has dili-gently searchedthe Internet fornews items relat-ed to hemophilia,VWD, other bleed-ing disorders,gene therapy,blood safety, hepatitis C treatment and HIVtreatment. He has created a mailing list ofpeople in the hemophilia community whoare interested in receiving news stories

� CHAPTER LEADERSHIP AWARDThis award is given to an individual who hasmerited special national recognition foroutstanding efforts to further the growthand development of a particular chapter inan outstanding and significant way.

2006 RECIPIENT | Norman LockeNorman Locke has worked to improve

the quality of life and standards of care ofpeople with hemophilia and inheritedbleeding disorders in Newfoundland andLabrador since 1994. Norman has filledmany roles within the Newfoundland andLabrador Chapter including chapter treas-urer, chapter president and member of avariety of committees. He has also been arepresentative on the National CHS Boardof Directors for the past five years andserved as Treasurer for the past threeyears.

In 2004 Norman initiated communitywalkathons in the province to raise moneyspecifically for research. This has become ayearly event and his enthusiasm andencouragement has resulted in thousandsof dollars being donated to the HemophiliaResearch Million Dollar Club. Each yearNorman appeals to his employer,Scotiabank, for corporate donations. Under

the ScotiaEmployeeVolunteerProgram, the bankhas been con-tributing $1,000per year for sever-al years. Normanhas also been aleader for the Red,White &Youfundraising initia-tive by hosting events at his workplace.

Norman is a strong advocate for ourmembers. Years of appealing to govern-ment through a succession of health min-isters culminated in MPTAP indexation forNewfoundland and Labrador in 2005.Norman’s tenacity and determination werekey to achieving this important milestone.

Norman continues to contribute to thegrowth and development of our organiza-tion by volunteering his time and energy,assisting in fundraising and lending hissupport to our efforts. He is most deservingof the Chapter Leadership Award for hisoutstanding contributions to theNewfoundland and Labrador Chapter overmany years.

� DR. CECIL HARRIS AWARDThis award honours distinguishedcontributions in the areas of hemophilia-related research or the advancement of thecare of patients with hemophilia or relatedbleeding disorders.

2006 RECIPIENT | Dr. Bruce RitchieDr. Bruce Ritchie’s accomplishments

as Assistant Director and most recentlyClinic Director of the EdmontonComprehensive Centre for BleedingDisorders have been both local andnational in scope. Dr. Ritchie is extremelydedicated to the careof his patients andgoes far beyond therequirements of aphysician and medicaldirector in this regard.He advocates for serv-ices that his patientsrequire and is willingto try new treatments.

He is dedicated topatient care but is also driven by hiscommitment to research and education.While President of the Association ofHemophilia Clinic Directors of Canada(AHCDC), Dr. Ritchie worked to improvethe funding of the organization and rollout improved technology for theCHARMS database. Another significantcontribution has been the organizationand delivery of the Blood BornePathogens Program that is being main-tained at the University of Alberta underhis direction.

Dr. Ritchie has been a strong support-er of standards of comprehensive careand has lent his support to other regionsof the country who were advocating forimproved comprehensive care in theirregion. In addition to serving as Chair ofthe CHS Medical and Scientific AdvisoryCommittee (MSAC), Dr. Ritchie is anactive member of the CHS Blood Safetyand Supply Committee and the Networkof Rare Blood Disorders Organizations.

Dr. Ritchie is a most deserving recipi-ent of the Dr. Cecil Harris Award for hisunwavering dedication to the care ofpeople with bleeding disorders over theyears.

Ian DeAbreu (L) receives hisaward from David Page, CHSExecutive Director.

Norman Locke receives hisaward from Colleen Barrett,NL Chapter President.

Dr. Bruce Ritchie

from around the world, news releases fromcompanies and community organizations,and research publications. Individuals whoare on his mailing list have been able tochoose items that are pertinent and for-ward them to those who need the informa-tion. Thanks to Ian’s efforts, hundreds ofitems about blood products and blood safe-ty have been forwarded to the CHS BloodSafety and Supply Committee and hundredsmore about hemophilia around the globe toWorld Federation of Hemophilia volunteersand staff. The same has been done withHCV/HIV articles. Ian has helped the CHSbuild a reputation of being “tuned in”. Ian’sInternet service allowed the CHS to cancelits news clipping subscription and savethousands of dollars over the years. Hisreliability has allowed CHS staff to focus onother tasks and saved hundreds of hours ofstaff time. Ian is a fine example of volun-teer dedication that makes a difference andis worthy of the Exceptional Service Award.

� AWARD OF APPRECIATIONThis award honours individuals who havedemonstrated outstanding service to the careof persons with hemophilia or relatedbleeding disorders over and above theirresponsibilities as a member of thehemophilia healthcare team.

2006 RECIPIENTS |Dorine Belliveau, RN

Dorine Belliveau has been the hemophilianurse at the clinic in Moncton, NewBrunswick, for over 12 years. During thistime she has given outstanding service tothe care of persons with hemophilia orrelated bleeding disorders in both NewBrunswick andPrince EdwardIsland. Dorine hasshown leadershipby playing anactive role on theexecutive of theCanadianAssociation ofNurses inHemophilia Care(CANHC), whereshe served asSecretary for three years and then went onto become President from 2003-2005. Shehas been the CANHC representative on theCHS National Program Committee for twoyears. Over the years she has providedexceptional support to the New BrunswickChapter through her participation in familyweekends, summer camp and at strategicplanning sessions. Her dedication to people

with bleeding disorders in two Maritimeprovinces for over 12 years makes her a veryworthy recipient of the Award of Appreciation.

Ruanna Jones, RSWRuanna has been the social worker at the

Calgary Children’s Hospital HemophiliaTreatment Centre for over 10 years. She hasbeen an active member of the CanadianSocial Workers inHemophilia Care(CSWHC) and hasserved as co-chairfor the past sevenyears. She is anexcellent advocatefor the role ofsocial workers inthe care ofpatients and fami-lies living withbleeding disordersand has served as a mentor with her nation-al colleagues.

Ruanna’s commitment to the bleedingdisorders community in Canada has beenreflected in her willingness to becomeinvolved in CHS projects. She has worked onthe planning committee and as a facilitatorat several national inhibitor workshops. Onthe international stage, she has been theCanadian representative on the NationalHemophilia Foundation Social WorkersCommittee and participated on the newlyformed WFH Psychosocial Committee.Ruanna has recently moved to another pro-gram and her contribution to the southernAlberta bleeding disorders community, theCHS and CSWHC will be greatly missed.

� CHAPTER RECOGNITION AWARDSThese awards are designed to recognize chapterswho have demonstrated an achievement over thepreceding year in a specific area.

2006 RECIPIENTS | Nova Scotia ChapterCommunications and Chapter Development

The Nova ScotiaChapter introducedBloodline, the firstnewsletter in thechapter’s 41 years ofexistence. It goesout to members andclinic staff severaltimes per year. Theyalso created aposter and pam-phlet that was dis-tributed to hospitals during 2007. The chaptermaintains a Web site about MaritimeAdventures Camp, their summer camp for chil-dren with bleeding disorders. The chapter hasbeen successful in involving new volunteers toassist with the organization of the annual familyweekend and fundraising activities including afundraiser with the Royal Bank, the annualPumpkin Regatta and the Curl for Hemophilia.

Newfoundland and Labrador ChapterPublic Awareness

Once again, theNewfoundland andLabrador Chaptermade outstandingefforts to raiseawareness aboutbleeding disordersin conjunction withWorld HemophiliaDay. An interviewappeared in theLewisporte Pilot andpublic service ads were published inTranscontinental newspapers and the Telegram.Additional public awareness activities to pro-mote bleeding disorders on April 17 includeddisplays at the Health Sciences Centre inSt. John’s and at Lewisporte Academy, a class-room party, a Hat Day fundraiser and a presen-tation at Lewisporte School.

The deadline to submit nominations for the year2007 National Awards is June 30, 2008. For fur-ther details about the National Awards Program,please visit the CHS Web site at:www.hemophilia.ca/en/11.5

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� PIERRE LATREILLE AWARDThis award for excellence is given to a currentor former staff member of the CHS working atthe national, chapter or regional level.

2006 RECIPIENT | Aline OstrowskiAline has worked for the QuebecChapter for five years. Originallyhired as the Quebec RegionalCoordinator, she quickly demon-strated her capabilities and appliedher management skills, good judg-ment and leadership to move thechapter forward after a difficultperiod. Since October 2004, shehas served as Executive Director ofthe Quebec Chapter. Her ability towork with a team and the support

Dorine Belliveau (R) receives heraward from Aline Landry, NBChapter President.

Ruanna Jones (R) receives heraward from Maureen Brownlow,Chair of the CHS ProgramCommittee.

Sandy Watson (R), NS ChapterPresident, receives the award fromPamWilton on behalf of his chapter.

Colleen Barrett (R), NL ChapterPresident, receives the award fromPam Wilton on behalf of her chapter.

that she provides to chapter volunteers havecontributed, in a large part, to the currentorganization’s smooth operation. During2006, Aline demonstrated exceptional devo-tion when, even though she was on mater-

nity leave, she came to lend ahand on a volunteer basis andcontributed to the great suc-cess of the fundraising activi-ty, Fiesta Salsera. Aline’s pas-sion for her job has a positiveimpact on all who work withher. She is a good listener andalways acts compassionatelytowards the membership. Forall of these reasons Aline isvery deserving recipient of thePierre Latreille Award.

Aline Ostrowski (L) receives heraward from Patricia Stewart,CHSQ volunteer.

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by Chantal RaymondCHS National Marketing andCommunications Coordinator

It has been 25 years since one ofCanada’s worst public health disasters,the tainted blood tragedy, began to

unfold. Thousands of Canadians died afterreceiving blood products contaminatedwith the human immunodeficiency virus(HIV). On November 26, 2007—the 10th

anniversary of the release of the FinalReport of the Commission of Inquiry onthe Blood System in Canada—the first“tree of life” was planted to commemorateCanada’s tainted blood tragedy and toensure that the lives lost will not be for-gotten nor in vain.

The ceremony, held at the headquartersof Canadian Blood Services (CBS) inOttawa, included people with hemophiliaand families of those affected by thetragedy, hemophilia treaters and advo-cates, and public health officials fromacross Canada. The poignant commemora-

tion allowed everyone present to reflect onthe terrible losses of the catastrophe, andthe efforts made since then to ensure asafe and secure blood system in Canada.

“Lessons learned from this tragedy willnever be forgotten and today, Canada’snational blood system is recognized by theWorld Health Organization as havingdeveloped the highest standards of bloodsafety and is a model for other countries,”said Federal Health Minister Tony Clementabout the commemoration.

The landmark 1997 KreverReport led to extensivereforms towards a safer bloodsystem and the creation ofCanadian Blood Services andHéma-Québec to manageblood safety and supply forthe population. Dr. GrahamSher, CEO of Canadian Blood

Services, unveiled a memorial plaque withthe sapling planted outside CBS head-quarters.

“The Canadian Hemophilia Societyhopes that the planting of ‘trees of life’ inall parts of Canada in the coming yearswill create a memorial forest extendingacross the country, as a permanent nation-al commemoration to the tainted bloodtragedy of the 1980s that has devastatedso many lives,” said Pam Wilton, Presidentof the CHS.

The concept of the “tree of life” waschosen for the Commemoration becausethe tree is an important symbol in almostevery culture. With its branches reachinginto the sky, and roots deep into the earth,a tree symbolizes life. For families whohave lost a loved one, it can be a dailyreminder that the person is not forgotten,that his/her memory lives on.

Tainted blood crisis in the 1980s

More than 1,100 Canadians wereinfected with HIV through tainted bloodproducts in the 1980s, including 700 peo-ple with hemophilia or other bleeding dis-orders. The tragedy affected not only thehemophilia community, but also otherCanadians who had received blood trans-fusions for childbirth, trauma, cancer, orsurgery. Three-quarters of these individualshave died. A much larger number—up to20,000 people—were infected with thehepatitis C virus (HCV) through blood andblood products before testing was intro-duced in 1990. The number of Canadians

FIRST “TREE OF LIFE” PLANTEDTO COMMEMORATE CANADA’STAINTED BLOOD TRAGEDY

“The Canadian HemophiliaSociety hopes that theplanting of ‘trees of life’ inall parts of Canada in thecoming years will create amemorial forest extendingacross the country, as apermanent national com-memoration to the taintedblood tragedy of the 1980sthat has devastated somany lives.”

Dr. Graham Sher,CEO of CanadianBlood Services

From left to right: Jeremy Beaty, John Plater, Mike McCarthy,Pam Wilton and James Kreppner

Commemorationof theTainted Blood

Tragedy

age the blood system, having placed our trust inthem to provide us with important, effective andlife-saving products.”

Due to unrelenting efforts by the CanadianHemophilia Society, in 1993 the federal govern-ment announced an inquiry into the blood system:the Commission of Inquiry on the Blood System inCanada. The Krever Commission spent fourpainstaking years investigating the events thatcontributed to Canada’s tainted blood tragedy. Thecommission brought the tragedy into the publiceye, and made landmark recommendations toensure the safety of blood and blood productsthrough the Canadian blood system.

National commemoration:the healing process

“Today, 10 years after the final Krever Reportwas tabled, we gather to continue the healingprocess,” Elaine Woloschuk said.

The CHS has requested that the federal govern-ment designate an annual commemorative day inmemory of Canadians who have died due to thetainted blood tragedy in the 1980s. The CHSNational Commemoration of the Tainted BloodTragedy, to be presided over by the HonourableHorace Krever, will be inaugurated later this yearat a ceremony on October 27 (the date of JusticeKrever’s appointment to head the public inquiry).A tree and memorial plaque will stand as a per-manent reminder of the tragedy in the nation’scapital. Trees of life will also be planted in provin-cial capitals.

Families that have been affected by the taintedblood tragedy are invited to plant trees in publicparks or in their private spaces, to commemoratetheir loved ones in their own way. A national com-memoration Web site will provide people with theopportunity to tell their stories of living with theconsequences of tainted blood, or of loved oneswho have passed away.

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who have died from HCV-related liver dis-ease caused by tainted blood is not known,but is estimated to be in the thousandsand continues to rise.

Elaine Woloschuk, President of theCanadian Hemophilia Society from 1988to 1990, has led the development of theCHS commemorative tree-planting initia-tive. “This is a bittersweet reunion. Bitter,because we know that too many have

needlesslylost theirlives to thediseaseknown asAcquiredImmuneDeficiencySyndrome(AIDS). Butsweet,because forthose of uswho havebeen affect-ed by thetaintedblood

tragedy, this tree and many others like itacross Canada will become a nationwidetribute by which we will remember thosemany individuals who have lost theircourageous battle with this disease,”she said.

It was 25 years ago that Canadiansbegan hearing about the deaths of individ-uals from a disease called AIDS, whichwould soon have a devastating impact onthe lives of people dependent on blood andblood products for their health. No one atthat time could predict the monumentaltragedy that lay ahead. Research began topoint towards an infection that was bloodborne and transmitted through bloodtransfusions—“as we later learned, throughinfusions of the very product that promisedhope for those who had inherited hemo-philia, a bleeding disorder affecting prima-rily the male population,” she noted.

The treatment for people with hemo-philia at the time was clotting factor con-centrates that had been derived fromblood. But the product that had providedso much hope for a life of normalcy wouldbe the very one that shattered as manydreams. “We felt a deep sense of betrayalby those who had been appointed to man-

Elaine WoloschukChair of the CommitteePresident of the CHS from 1988 to 1990

Jeremy BeatyPast President of the Hepatitis CSociety of Canada

Gershon Growe, MDFormer Medical Director,British Columbia Hemophilia ClinicMedical Director,Canadian Blood Services, BC/Yukon Division

James Kreppner, LLBSecretary of the CHS Board of Directors

Mike McCarthyFormer Vice President of the CHS (1999-2001)Former Chair of the CHS HIV/HCVTask Force (1997-2001)

John R. (Jack) McDonald, PhDProfessor Emeritus, Social Work,University of Calgary

Eric StoltePresident of the CHS from 2004 to 2007with a son infected by hepatitis C

Mary M. ThomsonPartner, Gowlings LLP

Pam WiltonPresident of the CHS

COMMEMORATIONORGANIZING COMMITTEE

Elaine Woloschuk, Chair of theOrganizing Committee

CHS representatives at the ceremony (from left to right): Norman Locke, Mike McCarthy, Aline Landry, James Kreppner, BillMindell, David Page, Elaine Woloschuk, Eric Stolte, Pam Wilton, John Plater, Patricia Stewart and Colin Patterson

The CanadianHemophilia Societyinvites all chapters,individuals withhemophilia and theirfamilies, and anyorganizations interestedin commemorating thetainted blood tragedyto contact us at

chs@hemophilia.ca.

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Canadian Blood Services A-A CBS continues to put a high priority on safety in the blood systemA CBS has maintained an excellent supplyC CBS shows little measurable progress in its plan to move towards greater plasma self-sufficiencyA CBS continues to be accountable and transparent in its decision-makingA+ Active Canadian blood donors get an “A+”

Héma-Québec A-A Héma-Québec deserves the highest marks for its commitment to safetyA Héma-Québec has also maintained an excellent supplyC Héma-Québec has developed a plan to move towards greater plasma self-sufficiencyA Héma-Québec continues to be open and transparentA+ Active Quebec blood donors get an “A+”

The Federal Government B-B Health Canada has reduced the backlog in approvals of biologic therapiesD Canada still has no Orphan Drug PolicyD The Health Canada drug approval process remains secretiveB The Standard for Blood and Blood Components is kept up to dateB- Surveillance systems are essential in a world where new pathogens are emerging yearlyA The federal government extends hepatitis C compensation to all

Canada’s Justice System FF The verdicts in the “Armour case” send the wrong message

Provincial GovernmentsA The provinces again deserve good marks for funding a safe, adequate supply of blood and bloodB products through CBS and Héma-QuébecB Provinces are slow to introduce comprehensive care for rare blood disorders

DD Recommendation # 1 of the Krever Report, no-fault compensation, has not been implementedA Quebec has an excellent hemovigilance systemA Ontario provides full cost-of-living indexation for HIV compensation paymentsB 7 more provinces have acted to index MPTAP over the last 3 yearsF Alberta stalls on MPTAP indexation

(Quebec)

(Capital Health inEdmonton and theCalgary Health Region)

(Other provinces)

(Other provinces)

CHS BLOOD SAFETYAND SUPPLYCOMMITTEE

Tom Alloway, PhD(Ontario)

Bill Featherstone(Manitoba)

Michael King, MD(Alberta)

James Kreppner, LLB(Ontario)

Martin Kulczyk(Quebec)

Wilma McClure, RN(Alberta)

Bill MindellChairperson(Ontario)

David PageStaff support(Quebec)

Mohammad Qadura(Ontario)

Bruce Ritchie, MD(Alberta)

Craig Upshaw(Alberta)

Pam Wilton, RN(Ontario)

The Canadian Hemophilia Society presented its 2005-2007Report Card on Canada’s Blood System on November 26,2007—the 10th anniversary of the release of the Final Report

of the Commission of Inquiry on the Blood System in Canada.This was the fourth such evaluation by the CHS since themilestone 1997 commission report known as the Krever Report,which led to a new national blood system.

The CHS also chose this day to launch the Commemoration ofthe Tainted Blood Tragedy, with a tree-planting ceremony at theheadquarters of Canadian Blood Services, in Ottawa.

“We promised our members we would do all in our power notto let such a tragedy happen again,” said Pam Wilton, CHSPresident. “The commemoration to remember those who lost

CHS releases Report Card on Canada’s Blood System

their lives, and the Report Card to focus attention on a safe andsecure blood system, are two parts of that commitment.”

The Report Card was prepared by the members of the CHSBlood Safety and Supply Committee (see below) in consultationwith stakeholders in the blood system, including representativesof other blood product recipient groups.

“Transfusion medicine has advanced greatly,” Pam Wiltonadded. “Clotting factor concentrates to treat bleeding disordersare now considered one of the safest therapeutics available;transfusions of red cells, platelets and plasma are safer than everbefore. Following the recommendations of the KreverCommission, major reforms were made to Canada’s bloodcollection and distribution system. But we must remain vigilant.”

by David Page, CHS Executive Director

S U M M A R Y G R A D E S

The complete Report Card can be viewed at www.hemophilia.ca/en/10.1.

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MPTAP Update: Good news!New Brunswick and Quebecindexation of paymentsleaves only Alberta stallingby Michel Long, CHS ProgramDevelopment Coordinator

Diligent advocacy work by CHS membershas produced the results that we have

long been hoping and waiting for: the gov-ernments of New Brunswick and Quebechave finally confirmed that they will beadjusting the payments that the provinces’residents receive through the Multi-Provincial/Territorial Assistance Program(MPTAP) to the cost of living (COL) index.This leaves Alberta as the only province lag-ging behind in indexation.

In a September letter to the CHS, NewBrunswick Health Minister Michael B.Murphy stated that the province had decided

to index the payments to recipients underthe MPTAP effective April 1, 2007, to reflectincreases in the annual Consumer PriceIndex (CPI) since the MPTAP program wasestablished in 1993. Recipients would benotified of the change and issued a chequereflecting the CPI adjustment for paymentscovered under the MPTAP since April 1, 2007.As of April 1, 2008, payments will be adjust-ed yearly to reflect increase rates of the CPI.“Our government is committed to improvingthe lives of all New Brunswickers and thisdecision will mean increased annual finan-cial support to the individuals receiving ben-efits under the assistance program,” MinisterMurphy wrote.

On November 23, 2007, Quebec HealthMinister Philippe Couillard announced thatthe province’s MPTAP indexation plan wouldbe retroactive to April 1, 2007. The indexa-tion takes into account consumer price indexvariations since 1994-95 and will raise theannual payment from the current $30,000 to

$38,956 per year. Payments were scheduledto begin in December 2007: in order toreceive the retroactive adjustment, benefici-aries must reply to the notification letterfrom the Canadian Blood Agency. Futurepayments will be adjusted according to theannual consumerprice index.

As forAlberta, CHSmembers in theprovince continue theiradvocacy work and remain hope-ful that the government of Alberta willfollow the other provinces and index pay-ments to the province’s residents coveredby the MPTAP program.

The Canadian Hemophilia Society (CHS) was very pleased to learnthat Kenneth E. Poyser, CHS President (1980-1982), is among this

year’s inductees into the Order of Canada.Ken, an Honorary Life Member of the CHS and a founding member

of the Hemophilia Research Million Dollar Club, was cited for his“lifelong dedication to improving the lives of those living with hemo-philia in Canada and abroad.”

Ken’s important work with the bleeding disorders community started decadesago as he was instrumental in obtaining home care for people with hemophilia. Inthe early 1980s, as CHS President, he recommended heat treating the blood com-ponents used to control hemophilia. Health Canada failed to heed the advice untilit was too late and Ken became one of thousands of hemophiliac victims of whatbecame known as the tainted blood tragedy.

Ken then went on to play an active role with the World Federation ofHemophilia (WFH) serving on the WFH Executive Committee for over 12 years.

At the December 2006 CHS Awards Banquet, Ken was presented with theInternational Contribution Award in recognition of his outstanding contribution tothe development of care and services for people with bleeding disorders at the inter-national level. On this occasion, Ken announced that he would make a $500 dona-tion to the Hemophilia Research Million Dollar Club to honour his angel, his wifeDarlene, and issued a heartfelt challenge that, if five others would match his dona-tion, he would double his gift and provide a $1,000 donation. His challenge wasquickly taken up by seven others and collectively they raised $5,000 for the club.

It is with great pride that the CHS has created a special Angel Club for any indi-vidual wishing to join Ken in this challenge by making a $500 to $999 donation.

Over the years Ken has demonstrated exceptional leadership and outstandingefforts towards the development of care and services for people with hemophiliaboth in Canada and around the globe. We are very proud of him!

Ken Poyser, Member of the Order of Canada Canadian hemophilianurse coordinator honoured

Elizabeth (Betty Ann)Paradis, has been

selected by the CanadianNursing Association(CNA) as one of 100exceptional registerednurses in Canada, in con-junction with their centennial celebra-tions, Celebrate a Century ofLeadership. Betty Ann has been theHemophilia Nurse Coordinator for theSudbury and Northeastern OntarioHemophilia Program for twenty-sevenyears. She is Past President of theCanadian Association of Nurses inHemophilia Care (CANHC) and cur-rently serves as their representative onthe World Federation of Hemophilia(WFH). Betty Ann has attended andpresented at hemophilia nursing con-ferences at the provincial, nationaland international levels and has beeninstrumental in the development ofhemophilia camps in Ontario for thepast 16 years. She is a past recipientof the CHS Award of Appreciation.Congratulations, Betty Ann!

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ChapterSpotlightNova Scotia Chapter

The First Annual Pumpkin Regatta was heldin Windsor, Nova Scotia on October 14,

2007. This year was the largest race yet with48 competitors in total and Wim, our FactorMan, came in 11th place – fantastic for his firsttime rowing this awkward round pumpkinacross thelake. Not tomention thathe beat theformer BostonBruins player,Bob Sweeney,and CleonDaskalakis, a local politician!

It all started with a parade that was a hugesuccess. We had about 35 people from the chap-ter and their families. Our float looked fantastic,we had two children’s wagons being hauledbehind the float handing out apples, and grand-mothers, aunts, friends and children seated onthe haystacks on the float waving and tossingout Bayer’s Dinosaurs. The dinosaurs were aHUGE success, people were talking, pointing,noticing CHS NS Chapter! We had about 15people “running” behind the float handing outbooklets on CHS and the NS Chapter, handingapples out to as many as we could, while thedinosaurs were flying everywhere.

Mark your calendars now, for the secondSunday in October in Windsor, Nova Scotia forour Second Annual Pumpkin Regatta for CHSNova Scotia Chapter!

Prince Edward Island Chapter

Throughout the months of November andDecember, one of the PEI Chapter’s newest

members, Shelley Mountain, has been busy withthe VWD Public Awareness Campaign. She hasalready done 2 presentations, both wellreceived, and has plans for at least two more inearly 2008. It seems there is a population wehaven’t tapped into yet, so we hope to round upsome new members for our chapter!

In December, we had a blood drive, com-plete with posters and radio announcementsand a local cable production, giving us lots ofexposure. Thanks to Canadian Blood Services!

Quebec Chapter (CHSQ)The importance of fundraising and teamwork

As demanding as the strategic planningexercise that the Quebec Chapter has

embarked upon has turned out to be, it has themerit of creating a profound feeling of team-

work among members, partners, and employ-ees, while also helping develop a sense ofbelonging to the organization.

Because they are now more aware of the guide-lines of the organization that represents them, forwhich they work, or that they support, the peopleand organizations affiliated with the CHSQ arecoming together to find ways to reach our goals, interms of building relationships and finances.

The emergence of a strong team spirit withinthe organization, motivated by the desire to “dobetter, together, for our community,” has led tonumerous benefits: a positive response to ourrequests for donations, self-financing activities,and our new way of looking at our membership(i.e., voluntary contributions instead of compulsoryfees); registration by several of our members in theDare to Dream for Hemophilia activity; the betterunderstanding of the importance of cultivatingand maximizing our collaborative ties with ourorganization’s national body, which complementsour activities and supports the well-being of per-sons suffering from bleeding disorders beyond thegeographical boundaries of the provinces; themotivation to move ahead together, our armslinked, toward a world without the pain and suf-fering caused by inherited bleeding disorders.

Hemophilia Ontario

Though we had our share of challenges in 2007,Hemophilia Ontario was able to provide one of

its more memorable programming years to date.With the help of committed staff and an equallycommitted community, Hemophilia Ontario wasable to provide a full range of programming. At thechapter level we witnessed the successful deliveryof familiar programs like Camp Wanakita,Hemophilia Ontario Youth summer and winterevents, the Families in Motion Marathon and Justthe Guys. At the regional level a whole host of pro-gramming took flight and found success.

For 2008, we look to continue this momentumand to provide those programs you have come toknow and love as well as to explore new program-ming ideas and delivery methods. We invite theentire community to join in our initiatives and tohelp make 2008 the most memorable year ever!

South Western OntarioRegion (SWOR)

It has been a very busy time in SWOR. Wewere represented in October’s Toronto

Marathon Relay by Team Burrows and TeamTravaglini (who ran the 42-km relay race in 3hours 44 minutes, – 5.2 minutes per km –, and

placed 40th outof 101 teams)and by CathrynArnold who ranthe half-marathon. Theirefforts raised$3,800 for theregion. Thankyou all for yourcontinued dedication to this event.

In November and December, SWOR hosted“Winter Celebration” memberevents, one in the north and onein the south end of the region.Our visit to Colisanti’s TropicalGardens near Windsor includedan exotic animal show, mini golf,kiddie rides, lunch and shoppingin the sports shop, home decorat-ing centre or greenhouses.

Goderich’s Huron CountyMuseum shared the region’s rich heritage forour north event. Touring the museum, learningfrom the interactive displays, watching twolocal history short movies, sharing pizza andpotluck dessert passed too quickly and we saidfarewell once again. We thank everyone forsharing their time and fellowship.

As a fundraiser, SWOR sold holiday wreaths –beautiful pine and balsam wreaths with a largebow. We sold a total of 160 wreaths. Manythanks to our Board and members for supportingthis initiative through their purchases and salesefforts. Next year we’ll have bigger sales!

Toronto and Central OntarioRegion (TCOR)Toronto Marathon

Janis (centre), avolunteer for

TCOR, ran 10 outof the 42-kmrelay race at theToronto Marathonon October 14,2007. Janis ranwith TeamTravaglini from SWOR.

TCOR Winter Party

This year’sTCOR Winter

Party was heldat the ScienceCentre. It was agreat successand members ofthe TCOR com-munity enjoyedevery momentof it.

“The only route that offers any hope ofa better future for all humanity is thatof cooperation and partnership.”

– Kofi Annan

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CHS 2005-2007 Report Card on Canada’s Blood System - This report marksthe fourth such analysis since the publication of the Final Report of theCommission of Inquiry on the Blood System in Canada (the Krever Report) onNovember 26, 1997, exactly 10 years ago. You can download it from the home pagewww.hemophilia.caFactor XI Deficiency – An Inherited Bleeding Disorder - Download the latest of our serieson factor deficiencies.www.hemophilia.ca/en/13.1Information booklet on Mild Hemophilia - Developed by the Atlantic Hemophilia NursesGroup of the Canadian Association of Nurses in Hemophilia Care (CANHC) and published byBayer HealthCare for people living with mild hemophilia and their families.www.hemophilia.ca/en/13.1Reminder - Self-Infusion: Confidence, Autonomy, Freedom - Video starring young peoplewith bleeding disorders describing their paths to self-infusion and the benefits they experi-ence. Filmed at summer camps in Quebec, the Maritimes and Ontario, it can be ordered fromthe National Office and viewed online.www.hemophilia.ca/en/13.3All About Carriers: A Comprehensive Guide for Carriers of Hemophilia A and B –Download the complete document published by the CHS in May 2007.www.hemophilia.ca/en/13.1All About von Willebrand Disease (Second Edition) – Download the Second Edition of thiscomprehensive guide first published in 2000 and revised in 2007.www.hemophilia.ca/en/13.1The home page – Follow the latest news in the Canadian bleeding disorders community byregularly consulting the CHS Web site home page.www.hemophilia.ca/en

New resources available!French version of All About Carriers: A Guide forCarriers of Hemophilia A and B is now available.

We are also pleased to announce the availabili-ty of two new resources developed by theCanadian Association of Nurses in HemophiliaCare (CANHC):

Factor XI Deficiency –An Inherited Bleeding DisorderThe latest in the series on Rare FactorDeficiencies, this document is a general informa-tion booklet about Factor XI Deficiency forpatients, families and healthcare providers. Thisbooklet was developed by the Quebec hemophil-ia clinic nurses in collaboration with the CHS.

Information booklet on Mild HemophiliaMild hemophilia can be very serious and evenlife-threatening if injuries or bleeds are nottreated promptly and adequately. This newinformation booklet for people living with mildhemophilia and their families was developed bythe Atlantic Hemophilia Nurses Group and pub-lished by Bayer HealthCare.

To order copies please contact the CHS officeat 1 800 668-2686 or chs@hemophilia.ca.The booklets are also available in PDF format atwww.hemophilia.ca/en/13.1.

Upcoming EventsCanadian Hemophilia Society

▪ April 30, 2008 - Deadline for the 2008 CHS Scholarship and Bursary Program. Applicationsare now available on the CHS Web site at www.hemophilia.ca/en/11.4.The following awards are granted:

– One $4,000 academic scholarship– One $4,000 bursary– One $4,000 mature student bursary

▪ May 17-19, 2008 - CHS Annual General Meeting and Board of Directors Meeting (St. John’s,Newfoundland and Labrador).

Quebec Chapter (CHSQ)▪ March 28-30, 2008 – Annual Family Weekend / Annual General Meeting.▪ April, 2008 – Red White &You events organized by members across the province.▪ May, 2008 – Bowl-a-thon in Quebec City and Montreal.

Hemophilia Ontario▪ February 22-24, 2008 - Hemophilia Ontario Youth (HOY) Winter Event at Camp Wanakita.Please call Luke Kilner for more details at 416 924-3446.

▪ April 18-20, 2008 - Hemophilia Ontario Volunteer Summit and Annual General Meeting atToronto BMO Learning Centre. Please call Nigel Small for more details at 416 972-0641.

Toronto and Central Ontario Region (TCOR)▪ Early-mid June, 2008 – Stress and Anger Management Workshop, presented and hosted byInalex Communications. (date and venue TBA)

▪ June 19, 2008 - The TCOR Annual Golf Tournament will take place again at the LionheadGolf & Country Club. We’re asking anyone interested in donating prizes, making a donation orparticipating in this year’s event, to contact Luke Kilner at the Toronto Hemophilia Office:1 888 838-8846, ext 23.

▪ Mid-late June, 2008 – Family and friends of the Hemophilia Society are invited to come andjoin in this year’s Families in Touch Annual Summer Picnic. (Date and venue TBD)

South Western Ontario Region (SWOR)▪ March 29, 2008 - SWOR is very excited to provide an educational opportunity to its mem-bers in an upcoming conference. Topics to be covered include von Willebrand disease, carriersissues, pediatric issues and hemophilia and aging— truly a lifespan conference. Watch yourmail for a brochure containing all details.

NOTICEThe Annual General Meeting of theCanadian Hemophilia Society willconvene as follows:Saturday, May 17, 2008 - 8:30 a.m.at the Fairmont Newfoundland,St. John’s, NL

1. To receive the report of theNominating Committee.

2. To acknowledge the DesignatedDirectors of each Chapter.

3. To nominate candidates for theDirector-at-Large positions on theCHS Board for 2008-2009.

4. To receive the audited financialstatements of the CanadianHemophilia Society for the yearended December 31, 2007.

5. To appoint an auditor for the ensuingyear.

6. To transact such other business asmay properly come before thisAnnual General Meeting of themembers of the CanadianHemophilia Society.

James KreppnerSecretary

What’s new on the CHS Web site?

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FUNdraising..........by Joyce Argall, CHS Annual Giving Coordinator and Pauline Major, CHS National Resource Development Manager

On Friday, October 5, 2007, the Canadian Hemophilia Society held one ofthe most exciting pledge-based fundraising events to hit Canada inyears—Dare to Dream for Hemophilia, held at the Bridgestone RacingAcademy just outside Toronto, Ontario. Participants spent the day at oneof North America’s most respected race car driving schools, learning how

to safely drive a Formula 2000 racing car. These pictures and testimonial from oneparticipant sum up the thrill and excitement that permeated this very special day.

Curtis Spicer, Honorary Chair, Dare toDream for Hemophilia

Ian DeAbreu, looking cool in both hispilot outfit and in his race car!

Mark DeAbreu, happy like a kiddriving a race car!

The “Astronauts”…

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“It was a dream coming true for me. Trying and succeeding in somethingchallenging, and at times fearful, was great. I can only imagine thechallenges and fearful moments people with hemophilia experience—your Dare to Dream for Hemophilia event showed me and the peoplethere that you can succeed... Seeing the happy boy with severehemophilia smiling and laughing while watching his father proudly as hetakes off in the fast sleek formula 2000 car—he dreams, dreams of thatbeing him one day. He is allowed to dream, because one day he will bethe person going out in the race car... Many challenges, many fearfulmoments for people living with hemophilia including their parents andfriends… I wish that we continue to ‘dare to dream’ and focus onimproving the current state, day by day, week by week, yearby year—ultimately making life better for people with hemophilia.”

ColouringBOOKREM IND ER

In the last issueof HemophiliaToday, we asked foryour assistance inpurchasing and pro-moting our uniqueBilingual Story Colouring Book. If you havealready done so, thank you!

If you have not yet had a chance toorder your colouring book, there is stilltime! Help us promote the love of readingand enrich the lives of children acrossCanada while supporting the inheritedbleeding disorders community.

To order your copy for $10, or for moreinformation please call 1 800 668-2686 ore-mail us at pmajor@hemophilia.ca.

THE BILLIEWHIZZLE HUNTLA CHASSE AUX BIRILUCHONS

You could be behind the wheel of a Formula 2000racing car at the Bridgestone Racing Academy on

September 19, 2008 faster than you think.

To register: www.idaretodream.caNext draw: March 27, 2008

..........FUNdraising

Pam Wilton and David Page, the CHS happy campers

Pam Wilton, contemplating her entry onthe fast track.

David Page, our very own Speed Demon

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YouthFileSarah

Bradshaw

EmilWijnker

National YouthCommittee Co-Chairs

Ayear has passed since the National YouthCommittee was struck. Since then, sev-

eral activities took place at both the nationaland provincial levels. Two of our majoraccomplishments were the implementationof our Web page and our participation inRendez-vous Québec. In 2008, our biggestendeavour will be the CHS National YouthLeadership Retreat, which will be held fromSeptember 5 to 7 at the Geneva Park YMCAConference Centre located in Orillia, Ontario.The curriculum will consist of speciallydesigned educational sessions for youngadults with leadership potential, focusing onleadership skills, team-building activities,goal setting, conflict management and cre-ative problem solving. A planning committeeconsisting of Emil Wijnker, Sarah Bradshaw,David Pouliot, Katie Hines, Patrick Syriani,Julia Sek and Hélène Bourgaize has beenstruck. More information regarding theretreat including the selection criteria forparticipants will be announced and availableon our Web page by the beginning ofFebruary. You can also contact your localchapter or youth representative to obtainmore information.

In 2007, we were lucky to send represen-tatives to Orlando, Florida, to participate inthe American National Youth LeadershipInstitute Meeting as well as have fourCanadians out of 15 participants attend thefirst International Step Up Reach OutProgram. You will find below two overviews,one from Emil Wijnker and one from AlexLittle, summarizing these two events. Onceagain, if you want to get involved or learnmore about youth activities, please feel freeto visit our Web page(www.hemophilia.ca/en/12.0) and contactyour local representative, who will be morethan happy to hear from you.

Building relationshipsby Emil Wijnker, National YouthCommittee Co-Chair

The American National HemophiliaFoundation (NHF) held its 59th Annual

General Meeting from November 1–4 atthe World Centre Marriott Resort andConvention Centre in Orlando, Florida.During this time, the National YouthLeadership Institute (NYLI—the NHF’s youngadults group) also met and ran a parallelmini-conference focused on youth leader-ship, advocacy, and organizational skills. CHSNational Youth Committee (CHS-NYC) mem-bers Sarah Bradshaw, David Pouliot, HélèneBourgaize, and I attended the NYLI session inthe hopes of making connections with ourAmerican counterparts and learning fromNYLI (established in 2004) as they prepare tohost a National Teen Leadership Weekend inFebruary. The NYLI group in Orlando wasamazing! They were very welcoming andprovided us with some great thinking pointsthroughout the weekend. Sarah and I (CHS-

NYC Co-Chairs) also met with ShellyMattson and Alex Nothern (NHF-NYLICo-Chairs) to discuss the similarities and dif-ferences between our two groups and talkabout the possibility of working together ona future, internationally focused youth-oriented project. The weekend was not only asuccess for the NHF and their AGM, but forus as well, as we came away from the week-end having made new friendships, establishednew connections within the bleeding disorderscommunity, and having learned a lot aboutleadership, advocacy, and organizational skills.

It was a very unique and rewarding opportu-nity to spend time with other young peopleborn with the same life-altering condition.

Conversations and information sessionsfocused around the concept of living with ableeding disorder, depending on different cul-tures, ages, and backgrounds. The men gath-ered at the conference were brought togetherwith only one unifying thread, but otherundeniable similarities came through and itproved to be a fascinating look into how sucha condition can shape one’s beliefs, and iden-tity. Care for bleeding disorders in differentcountries was compared, and the participantsgot a firsthand look into how care differsaround the world.

This trip to San Francisco was the firstpart of the two-part program that sees theparticipants heading to Houston for the sec-ond part in February of 2008. In the interim,participants are encouraged to become moreactive in their respective countries and takethe first steps to becoming a leader in thebleeding disorders community. These partici-pants are ideally stepping up to fill the shoesof the valued leaders that the communitycurrently has. If the excitement and antici-pation that was exhibited at the end of thefirst sessions was any indication, these menare more than willing to do what it takes tofill these shoes.

Hemophiliacs unite atleadership conferenceby Alex Little, Calgary, Alberta

Blood brothers from around the worldcame together at the First Annual Step

Up Reach Out Program that took place inSan Francisco, California, from September14-17, 2007. The program brought togetherhemophiliacs from Britain, Germany, NewZealand, Spain, Canada, and the UnitedStates in order to encourage them tobecome more active in their respective com-munities. Participants shared stories abouttheir individual experiences having hemo-philia, learned a great deal about their con-dition in the valuable ‘Hemophilia 101’ ses-sion, and toured the abundant San Franciscoattractions. Great accommodation was pro-

vided, delicious mealsenjoyed, and friend-ships created. The par-ticipants were treatedto a baseball game, atour of the plantwhere Kogenate® FS isproduced and distrib-uted, and meals over-looking the gorgeousSan Francisco wharf.Some participants at the First Annual Step Up Reach Out Program

Participants at the National Youth Leadership Institute Meeting

Diane discovered his ankle wasswollen to the size of an orange. Ittook four months to get over thatseries of bleeds! Diane was told that,although Mackenzie had been diag-nosed with moderate hemophilia, hecould still suffer from severe bleeds.

Starting the infusion processwas also quite frightening. Like anyparent infusing her child, Diane hasto emotionally detach herself. Shefeels that if Mackenzie senses heranxiety, she has trouble finding avein and as a result, the infusioncannot proceed. Mackenzie is nowon prophylaxis three times a week. In August 2006, when infusingMackenzie became very difficult, a child psychologist came to the rescue.

One day, the social worker from the treatment centre mentioned toDiane that she could probably register Mackenzie with the Children’s WishFoundation. And she did. To their great joy and surprise, Mackenzie wasgranted his wish. He will be going on a Disney cruise and then to DisneyWorld for a week. He can take along his cousin, Blake, and Diane can alsobring a friend to share in this great adventure.

In Diane’s eyes, Mackenzie deserves that his wish be fulfilled. Not longago, when Mackenzie’s friend asked him why he was taking medicine, hereplied, at the young age of five, “Without my medicine, I’m going to die.”To Diane, that’s just one example of what can go through the mind of achild with hemophilia and that, alone, deserves that a special wish begranted to all children with hemophilia.

Having benefited from the programs and activities offered by theCHS, Diane decided to become a volunteer at both the chapter andnational levels. At the Nova Scotia Chapter, she is responsible for com-munications and the chapter newsletter and is also their fundraisingrepresentative. She has been a great advocate for the CHS. Among otherthings, she has shown the CHS public awareness video to social clubsand to many branches of the Royal Bank for whom she works.

Diane is not an ordinary woman. Yet she doesn’t see herself as brave.She just does what she has to do for her son to stay healthy. It’s her son

who is very brave,she says. She justmakes sure her lifewith Mackenzie isall about havingfun and appreciat-ing every momentthey have togeth-er. Nothing is evertaken for grantedin the lives ofDiane andMackenzie.

Diane is not an ordinary woman.She is an energetic fun-loving single

mom of a five-year-old adopted son withhemophilia.

Diane had always wanted a child. Herperseverance led to numerous surgeriesand artificial insemination until a rup-tured appendix that nearly killed her put

a stop to the hope of her ever being pregnant. Three weeks after thatterrible event, she registered to adopt.

Then, the good news came: a friend of a friend, a 15-year-old, choseadoption for her child and wished for Diane to adopt her baby. Bothwomen spent four great months together preparing for the birth. OneThursday, the little miracle was born; the following Monday, the birth-mother had changed her mind.

Following this last-minute failed adoption, Diane was very depressedfor a couple of months. When she got back into the “sane world” as shesays, she registered again to adopt. Eleven months later, Diane washolding her dream baby in her arms. It was love at first sight. Everythingwas going to be all right now.

A year and a half later, Mackenzie fell off his bed. Diane took himinto her own bed for the rest of that night. When Diane woke up thenext morning, there was literally blood everywhere. Mackenzie’s lip wasbleeding non-stop. Then, the phone rang: Diane’s mother had had a ministroke. The drama just wouldn’t stop.

Diane packed some bags to make the three-hour trip from her hometo Halifax to see her mom while trying to stop Mackenzie’s bleeding lip.Before leaving for Halifax, she decided to stop at the hospital to haveMackenzie checked. There, they tried many ways to stop the bleedingbut nothing worked. She was then told to leave for Halifax, that thewound would heal by itself, that she was overreacting. Off she went.Blood was everywhere in the car.

When they arrived in Halifax, Diane left her son in the care of hersister and went to see her mom. When she came back, the bleeding hadnot stopped. Diane took him to Children’s Hospital where doctors andnurses stripped him down and seemed to be looking for bruises. Theywere looking at Diane as if she had beaten her son. It’s a look she willnever forget.

She finally reached a hematologist who said they would do somemore blood tests. In the meantime, they would give Mackenzie a trans-fusion to compensate for his blood loss. Diane, who had lost manyfriends to AIDS and knew about the tainted blood tragedy, put her handon the bag and prayed that this blood was safe.

The next morning, the news broke: “We know what’s wrong with yourson.” Diane’s heart skipped a beat at the hemophilia diagnosis. In shock,she didn’t hear much after that. Four days later, the nurse coordinatorwho would take care of Mackenzie explained what she needed to knowand gave her reading material to take home. It was all overwhelming.

A different life was starting for Diane and Mackenzie. A life thatincluded unusual care and treatment, with some pretty scary moments.Once, at two and a half years old, Mackenzie repeatedly fell on his bum.

H E M O P H I L I A T O D A Y W I N T E R 2 0 0 8 17o u r s t o r i e s

OurStories

Children’s Wish Foundation of CanadaThe Children’s Wish Foundation of Canada works with the community to provide children living with high-risk, life-threatening illnesses or disor-

ders the opportunity to realize their most heartfelt wish. Included in a wish can be airline tickets, accommodations, transportation, medical insurance(an exclusive agreement between the Children’s Wish Foundation of Canada and Blue Cross provides each of the wish families with medical insurance,waiving the “pre-existing illness” clause for the wish child, and covers the rest of the family for medical emergencies as well), expense money,attraction passes, emergency assistance, etc.

For more information, please go to the Children’s Wish Foundation of Canada at www.childrenswish.ca.

Diane and Mackenzie: love at first sightby Chantal Raymond, CHS National Marketing and Communications Coordinator

Mackenzie and Diane, a perfect match

Blake and Mackenzie, at the NS Chapter Pumpkin Regattafundraising event

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MedicalNews

Hepatitis C Press Reviewby Michel Long, CHS Program DevelopmentCoordinator

� Drug boosts platelets in hepatitis Cpatients

www.HealthNewsDigest.com. Nov. 29, 2007 –It’s not a cure, but this may be some of thebest news patients infected with the hepati-tis C virus (HCV) have heard in a long time:A new drug, eltrombopag, appears to beeffective in boosting low platelet counts,one of the major reasons why patients can‘tendure antiviral treatments. Other drugs thatcan restore normal platelet functions areinfusions or injections; eltrombopag is a pilltaken just once a day.

Researchers at Duke University MedicalCenter and other centres worldwide studiedeltrombopag (marketed as Promacta in theU.S. and Revolade in Europe byGlaxoSmithKline) in 74 patients with lowplatelet counts and cirrhosis of the liver dueto HCV infection. They found that it boostedplatelet counts in a majority of patients ateach of three dosage levels, enabling most ofthem to continue or start conventionalantiviral treatment. “We feel this is animportant development for many peopleinfected with the hepatitis C virus world-wide,” says Dr. John McHutchison, Professorof Medicine and Associate Director of theDuke Clinical Research Institute. “A signifi-cant number of patients with HCV infectionwill at some point develop platelet problemsthat will compromise their getting the besttreatments we have. Anything we can do toprevent that from happening would improvetheir care.”

Platelets are cells made in the bone mar-row that are important in clot formation,and serious bleeding can occur if plateletlevels fall too low. Some diseases, like HCVinfection, can cripple the body’s ability tomanufacture platelets, but so can somemedical treatments. The Duke study foundthat eltrombopag worked in a dose-depend-ent manner, meaning that patients got abetter response with increasing amounts ofthe drug. Seventy-four percent of those in

clinicians can confidently discontinue treat-ment in patients who do not achieve anearly response.”

Pegasys plus Copegus is the only pegylat-ed interferon combination therapy to havedemonstrated significantly superior benefitsover conventional interferon combinationtherapy across all HCV genotypes, irrespec-tive of viral load. The combination of Pegasysand Copegus consistently shows high curerates, up to 66 percent overall sustainedvirological response across a number oflarge, randomized clinical studies includingin patients with difficult-to-cure diseasesuch as genotype 1 HCV, cirrhosis, and HIV-HCV co-infection. Pegasys is available inCanada. Given that the criteria for financialcoverage may vary from province toprovince, interested individuals should verifythe criteria in their own jurisdiction based ontheir own situation.

� Interim data show Nitazoxanide (Alinia)improves anti-HCV activity when addedto pegylated interferon plus ribavirin

www.hivandhepatitis.com. Nov. 13, 2007 –The addition of the experimental anti-HCVdrug nitazoxanide (Alinia) may significantlyincrease sustained response rates whenadded to pegylated interferon plus ribavirin,according to data presented at the recent58th Annual Meeting of the AmericanAssociation for the Study of Liver Diseases(AASLD 2007) in Boston, November 2-6, 2007.

“Patients treated with nitazoxanideresponded earlier and maintained theirresponses without relapse after receivingonly 36 weeks of treatment with peginter-feron and ribavirin,” said Dr. Emmet B.Keeffe, Chief of Hepatology at StanfordUniversity School of Medicine. “These datasuggest the emergence of a new therapeuticapproach for treating hepatitis C. Whilemore study is needed to confirm theseresults in a broader population of patients,nitazoxanide appears to increase the potencyof interferon without increasing toxicity orinducing resistance.”

“Results from this trial validate a newapproach to treating HCV that focuses onthe interaction between the virus and thecell,” said Dr. Jean-François Rossignol,Director of the Romark Institute for MedicalResearch.

Romark Laboratories is currently conduct-ing a U.S. Phase II trial with nitazoxanideplus standard of care in patients with hepa-titis C genotype 1 who were previouslytreated with interferon. The company also

the trial who took the lowest dose saw theirplatelet counts go up significantly, while79 percent and 95 percent of the partici-pants saw increases with the higher doses.

“We are encouraged by these results andare already working on another multi-centre,international, phase III trial where we hopethese results will be confirmed,” saysMcHutchison. However, eltrombopag doescause side effects. Some of the patientscomplained of headaches, dry mouth,abdominal pain and nausea.

� Treatment with Pegasys provideshepatitis C patients a second chance toachieve a cure after not responding toPeg-Intron

www.medilexicon.com. Nov. 5, 2007 –Roche announced final results from theREPEAT study which demonstrate that treat-ment with once-weekly Pegasys (peginterfer-on alfa-2a) and daily Copegus (ribavirin) canachieve viral clearance in a number ofpatients who did not respond to initial treat-ment with Peg-Intron (peginterferon alfa-2b),another drug commonly used to treathepatitis C.

This outcome gives hepatitis C patientsthe opportunity to tackle their disease a sec-ond time after initial treatment failure.Furthermore, the results show that apatient’s response to treatment at 12 weeksis a powerful predictor of the eventual out-come: the majority of patients with unde-tectable virus levels at 12 weeks went on toachieve a sustained virological response(SVR), indicating treatment success. Fewpatients with detectable virus at 12 weeksachieved SVR.

“One of the greatest areas of need inhepatitis C today is to find solutions forpatients who have not had treatment suc-cess with an initial course of therapy.REPEAT is a landmark study that adds signifi-cantly to our knowledge about how to man-age these patients, demonstrating thatextending treatment with Pegasys is a prom-ising option,” said Donald Jensen, MD,Professor of Medicine and Director of theCenter for Liver Diseases at the University ofChicago Hospital in Chicago, and lead inves-tigator in REPEAT. “An important findingfrom REPEAT is confirmation of the reliabilityof using a patient’s response at 12 weeks asa predictor of treatment success, even inpatients with cirrhosis. This means thatpatients who achieve undetectable virus at12 weeks can continue treatment with agood likelihood of success. It also means that

plans to initiate a Phase II trial in treatment-naive patients early in 2008. Alinia is aninvestigational new drug in the UnitedStates for treating chronic hepatitis C.

� In largest U.S. hepatitis C trial,researchers determine weight-baseddosing is key to optimal treatment

www.medilexicon.com. Dec. 28, 2007 –As reported recently in the journalHepatology, WIN-R, a multicentre study ofover 5,000 patients with HCV, showedtreatment with weight-based Rebetol®(ribavirin) (RBV) in combination with pegy-lated interferon (PEG-IFN) alfa-2b achievedsignificantly higher rates of sustained viro-logic response (SVR) and lower relapse ratescompared to combination therapy using aflat dose of RBV 800 mg/day. Superiorresponse was found particularly in patientswith the most difficult-to-treat form of thedisease, genotype 1 HCV. Efficacy was con-sistent across all weight groups.

For patients infected with genotype 2 or3, a 24-week course of treatment with flat-dose RBV and PEG-IFN was as effective asthe standard 48-week course, with bettertolerability, and in the overall study popula-tion flat dosing of ribavirin was as effectiveas weight-based ribavirin. However, withinthe flat-dose cohort of patients with geno-types 2 and 3, sustained response ratesshowed a slight decline in the higher-weightpatients given flat-dosed ribavirin.

“These findings help define optimal ther-apy for U.S. hepatitis C patients,” says thestudy’s principal investigator, Dr. Ira M.Jacobson. “Our findings underscore thatweight-based dosed combination therapy issignificantly more effective than the flat-dosed RBV regimen, especially in more diffi-cult-to-treat patient groups, such aspatients with genotype 1 and African-American patients. Patients being treated forhepatitis C should talk to their doctors to besure they are receiving the most effectivetherapy.”

“The study data strongly suggest adopt-ing a 1400 mg/dose for patients who weighmore than 105 kg. In my opinion, the largerdose provides an opportunity for very heavypatients to have the same chance of cure aslighter patients without compromising safe-ty,“ says Dr. Jacobson.

Overall safety with weight-based dosingwas similar to that of the flat 800 mg dose.There was no difference in the occurrence ofserious adverse events in the entire group,as well as in the African-American group.

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OPPORTUNITIES TO PARTICIPATE IN RESEARCH

Study on coagulation in pregnant womenby Dr. Christine Demers

Pregnant women who are carriers of a hereditarycoagulopathy are at risk of bleeding, especially in the post-partum period. Treatment in these cases is complicated by thefact that there is little data on variation of coagulation factorlevels during and after pregnancy. A study designed to measure coagulationparameters in pregnant women with and without coagulopathy is currentlyunderway. The study is being carried out by the Subcommittee on Women withBleeding Disorders of the Association of Hemophilia Clinic Directors of Canadaand is supported by the Canadian Hemophilia Society. Recruitment of pregnantwomen without coagulopathy is now complete, but recruitment of pregnantwomen with coagulopathy (von Willebrand disease, Factor XI deficiency, andhemophilia A and B carriers) is ongoing. The Centre d’hémophilie pour l’Est duQuébec is currently recruiting volunteers, and the Ste-Justine University HospitalCentre and the Montreal Children’s Hospital plan to begin shortly.

Clinical Mentoring Programby Catherine Van Neste, PT, Hôpital de l’Enfant-Jésus, Quebec City

For several years now, Canadian Physiotherapists in Hemophilia Care have participated intwinning activities in order to lend a hand to hemophilia clinics elsewhere in the world.Subject to local restrictions that may apply, they provide assistance in the form of teach-ing and setting up basic physiotherapy care in the hope that the knowledge they con-tribute will make a small difference in the long run.

Physiotherapy care in Canada is something else entirely. Not only do all treatment cen-tres in the country have qualified physiotherapists, but the treatments provided here arebased on the most recent findings in the field. To improve and maintain this standard ofcare, an ongoing effort is required, and various measures have to be put in place, such as:

• Drafting of a constitution defining our group’s role• The recent adoption of precise standards based on convincing scientific data• Plans to create of an interactive DVD as a teaching tool• Creation of the Canadian Physiotherapists in Hemophilia Care Web site• Regular participation by new physiotherapists in the New Team Workshop• The brand new Clinical Mentoring Program

The Clinical Mentorship Program, which enjoys financial support from Bayer, is designedto help new physiotherapists in treatment centres quickly familiarize themselves withhemophilia and its consequences by pairing them with more experienced colleagues inthe field. They have the opportunity to witness different clinical situations, so they graspthe important points, and can establish an appropriate treatment plan. The mentoring isdone in Winnipeg, Toronto or Montreal, and we hope to be able to accommodate twophysiotherapists a year. This approach should considerably improve the knowledge ofyoung physiotherapists as they start working directly with hemophilia patients, enablingus to provide a high level of service nationwide.

Canadian Physiotherapists in Physiothérapeutes canadiensHemophilia Care en hémophilie

H E M O P H I L I A T O D A Y W I N T E R 2 0 0 820 t h e b l o o d f a c t o r

by David Page,CHS Executive Director

� Inspiration Biopharmaceuticals setto begin clinical trials with newrecombinant factor IX

LAGUNA NIGUEL, CA, November 13,2007 - Inspiration Biopharmaceuticalshas filed an Investigational New Drug(IND) application with the U.S. Foodand Drug Administration (FDA) to beginclinical trials with IB1001, an intra-venous recombinant Factor IX (rFIX)product for the on-demand and pro-phylactic treatment of hemophilia B.

Phase I/II clinical trials will evaluatethe pharmacokinetics (PK) and safetyprofile of IB1001, compared with thecommercially available factor IX prod-ucts, BeneFIX®, manufactured by Wyeth,and Mononine®, manufactured by CSLBehring, both currently used in Canada.

Research will also include a six-month phase I/II trial to documentsafety and efficacy in on-demandtreatment of spontaneous bleedingepisodes, and a phase II/III prophylaxistrial to show safety and efficacy in theprevention of spontaneous bleeding. Inaddition, IB1001 will be evaluated inthe control of bleeding during surgicalprocedures. The rate of inhibitor for-mation will be measured throughoutall phases.

“We are excited to be filing an INDfor IB1001,” said Michael Griffith, PhD,President and CEO, InspirationBiopharmaceuticals. “Preclinical stud-ies have demonstrated the expectedPK and safety profile for IB1001 whencompared to the clinically provencommercial factor IX products. Ourcost-effective manufacturing platformfor factor IX positions Inspiration toexpand the global supply of rFIX andto develop next-generation productsto facilitate prophylactic care ofhemophilia B patients worldwide.”

“Our vision is that one day allpatients with hemophilia, regardless ofwhere they live, will have access totreatment. More affordable treatmentis critical to achieving treatment forall,” stated Mark Skinner, President,World Federation of Hemophilia. “Theavailability of lower-cost rFIX productsto treat hemophilia B could facilitatemore prophylactic use, as well as maketreatment more accessible to peopleworldwide.”

� Study shows feasibility ofdeveloping a half-life extendedrecombinant FVIIa

ATLANTA, GA, December 10, 2007 - CSLBehring today announced the results ofa pre-clinical study that show for thefirst time that it is feasible to geneti-cally fuse recombinant factor VIIa(rFVIIa) to human albumin, prolongingthe half-life of this therapeutic proteinwhile retaining its biologic activity. Thestudy was presented at the AmericanSociety of Hematology 49th AnnualMeeting and Exposition.

The half-life of the rFVIIa-albuminprotein was shown to be extended six-to ninefold compared to current for-mulations of rFVIIa. Additionally, rVIIa-albumin demonstrated comparable bio-logic activity.

Recombinant factor VIIa is used tocontrol bleeding episodes in hemophiliapatients with inhibitors. However,rFVIIa has a short half-life of approxi-mately 2.5 hours. This necessitatesmultiple injections, which are incon-venient for both physicians andpatients, particularly during surgery.

“The pharmacological propertiesseen in our study could one day facili-tate a single dosing regimen of oneinjection per bleeding event, as well assignificantly reduce the number ofinjections hemophilia patients withinhibitors need during surgical inter-ventions,” said lead investigatorDr. Stefan Schulte, Head, Pre-clinicalR&D, CSL Behring.

� Novo Nordisk in partnership withFrench biotech company oninhibitor therapy

COPENHAGEN, Denmark, December 17,2007 - Novo Nordisk of Denmark hasannounced it has licensed global rightsto a potential new hemostasis therapynow in early preclinical development.

The agreement with the Frenchbiotechnology company C2X Pharmaand the French national institute forhealth and medical research (Inserm) isrelated to thrombin-activable factor X.The protein is a bypassing agent capa-ble of promoting blood clotting, aNovo Nordisk spokesperson said.

Other bypassing agents, notablyNiastase® (recombinant FVIIa), alsomanufactured by Novo, and FEIBA®(made up of factors II, IX and X, plusactivated FVII), manufactured byBaxter, are currently used in the treat-ment of bleeding episodes in peoplewith hemophilia A and B andinhibitors.

UPDATE TO CLOTTING FACTORCONCENTRATE CHARTS

In the Spring and Summer 2007issues of Hemophilia Today, the CHSpresented charts summarizing char-acteristics of clotting factor concen-trates distributed in Canada. Pleasesee this additional information.

• Advate® is not currently availablein the 2000 IU vial size in Canada.

• Recombinate® is approved byHealth Canada but not currentlydistributed in Canada.

• Hemofil M® is approved by HealthCanada but distributed only throughthe Special Access Programme.

• FEIBA VH® is stored at 2-8°C or atroom temperature for up to 6months.

The

BloodFactor

H E M O P H I L I A T O D A Y W I N T E R 2 0 0 8 21t h e b l o o d f a c t o r

Introduction of Helixate® FS by Canadian Blood Services

January 10, 2008 - Canadian Blood Services recently carried out a Request For Proposal(RFP) process for plasma products, recombinant factor VIII (rFVIII) and contract fractiona-tion. Patient and physician stakeholder groups were included on a Selection AdvisoryCommittee (SAC) that assessed the bids from the vendors and made recommendations toCanadian Blood Services. The Canadian Hemophilia Society (Bill Mindell) and theAssociation of Hemophilia Clinic Directors of Canada (Dr. Bruce Ritchie) were representedon the SAC.

Security of supply is the primary objective for Canadian Blood Services and its con-sumer partners. Diversifying the supplier base for plasma products and recombinant prod-ucts supports that objective. Where feasible, achieving cost savings through competitivebids for products is also an important objective.

One of the outcomes of the RFP was the recommendation by the SAC to include CSLBehring’s Helixate® FS in the group of rFVIII products distributed by Canadian BloodServices (in addition to Bayer’s Kogenate® FS and Baxter’s Advate®).

After negotiations between Canadian Blood Services and the vendors, the mix ofBayer’s Kogenate FS and CSL Behring’s Helixate FS was finalized at 90% Bayer’s KogenateFS and 10% CSL Behring’s Helixate FS. The objective is to remain close to this 90/10 ratiofrom year to year over the next five years. Canadian Blood Services expects to distributeHelixate FS beginning in approximately mid-summer 2008. This target date may changedepending on factors such as product availability from CSL. Canadian Blood Services iscurrently discussing the best approach to implementing Helixate FS with representatives ofthe Canadian Hemophilia Society, the Association of Nurses in Hemophilia Care, and theAssociation of Hemophilia Clinic Directors of Canada.

- Canadian Blood Services

CHS supports introductionof Helixate® FSby David Page, CHS Executive Director

The Canadian Hemophilia Societysupports the introduction ofHelixate® FS in Canada. Helixate FS

is a recombinant factor VIII concentratedistributed by CSL Behring.

“Helixate FS in fact is identical toKogenate® FS,” said Bill Mindell,Chairperson of the CHS Blood Safetyand Supply Committee, and member ofthe Selection Advisory Committee, whichprovided recommendations to CanadianBlood Services and Héma-Québec onbehalf of the CHS. The Committee’smandate was to provide advice on therange of factor products to be purchasedin Canada over the next five years.

Helixate FS is manufactured by Bayerat Bayer’s Berkeley California facility andis exactly the same recombinant factorVIII product as Kogenate FS. Through abusiness arrangement between CSLBehring and Bayer, CSL Behring distrib-utes a portion of the Berkeley produc-tion under the brand name Helixate FS.Only the packaging and reconstitutiondevices are different from Kogenate FS.

“In addition to the quality and safetyof products, security of supply hasalways been a key CHS objective,” BillMindell added. “Therefore the involve-ment of a third commercial supplier inthe provision of recombinant factor VIIIproducts is welcome news.”

The other recombinant factor VIIIproduct distributed in Canada isAdvate®, manufactured by Baxter.

Helixate FS is not new to the Canadianmarket. Several million units were distrib-uted during the factor VIII shortage in2002.

Starting in the second quarter of2008, Helixate FS will be distributed byboth Canadian Blood Services andHéma-Québec. (See the accompanyingstatements from both Canadian BloodServices and Héma-Québec for details.)

Introduction of Helixate® FS

CSL Behring will be Héma-Québec’s sole supplier for Helixate® FS,the antihemophilic factor

January 15, 2008 - Last year, as part of its mission to supply adequate quantities of opti-mal quality blood components and substitutes to meet the needs of all Quebecers, Héma-Québec issued a public Request For Proposals for antihemophilic factor, as the contractwith Bayer ends in 2008. Bayer and CSL Behring were the proponents chosen by the selec-tion committee, which included representatives from the Association of Hemophilia ClinicDirectors of Canada and the Canadian Hemophilia Society.

Subsequent to the financial analysis of the submissions received through the RequestFor Proposals, and in compliance with the Secrétariat du Conseil du Trésor du Québec regu-lations regarding procurement and contracts, Héma-Québec has decided to retain CSLBehring as its sole supplier for Helixate® FS, the antihemophilic factor which is, for allpractical purposes, identical to Kogenate® FS.

A work group of representatives of Québec’s hemophilia clinics, the CanadianHemophilia Society – Quebec Chapter, and Héma-Québec are collaborating with CSLBehring to make sure that the needs of patients and nursing staff are met. To handle thetransition smoothly, the company will provide work tools for patients and nursing staff athemophilia clinics.

The contract was awarded to CSL Behring pursuant to Secrétariat du Conseil du Trésordu Québec regulations regarding procurement and contracts to which Héma-Québec issubject. The decision to procure Helixate FS exclusively was made in the best interests ofQuébec’s health system and will generate major savings over the next five years, withoutaffecting patient treatment. As of the spring of 2008, therefore, Québec hemophiliacs whoare currently receiving Kogenate FS will begin to be treated with Helixate FS.

- Héma-Québec

H E M O P H I L I A T O D A Y W I N T E R 2 0 0 822 a g l o b a l p e r s p e c t i v e

GlobalPerspectiveThis inspiring story, about the key role ofDr. Man-Chiu Poon, Director of the SouthernAlberta Hemophilia Treatment Centre, inhelping save a child’s life in China was origi-nally published in the fall 2007 issue of theCHS Alberta Chapter newsletter. The articlehas been reprinted with the permission ofthe chapter and the families mentioned inthe article.

Dr. Poon first began to devote his time andskills to improving care and treatment forpeople with hemophilia in China in 1993,when he led a hemophilia workshop organ-ized by the World Federation of Hemophilia(WFH). In 1997, a formal WFH centre twin-ning was established between theHematology Institute in Tianjin, China,and the Southern Alberta HemophiliaTreatment Centre in Calgary. Dr. Poon wasrecently awarded the CHS InternationalContribution Award for his outstandingefforts to improve the care and treatmentof people with hemophilia living in China.(Please see article on National Awards onpage 5.)

Ihave been volunteering with theCHS Alberta Chapter for severalyears now. I’ve had the privilege ofmeeting many members of theAlberta Bleeding Disorders

Community and also been fortunate toget to know the staff at both of ourAlberta Clinics through my involvementon the Chapter Executive over the pastseveral years. I have to admit that I havefaced times where I have questionedwhether I should devote so much time tothe CHS. That questioning was put to restrecently when all of my involvement inthe CHS came together and enabled meto become a small part of an effort tosave the life of a precious little girl inChina.

Friends of mine have been in China fora couple of years doing humanitarian

work. They had become familiarfaces at an orphanage there and atthe end of May were met with arequest from the Director of theorphanage. A baby had been aban-doned and been brought to theorphanage but she was very sick.The Director asked my friends ifthey would take this little girlhome and care for her in what wasbelieved to be her last days. Myfriends agreed. I learned of theirlife with this little child throughregular communication that weshare through our circle of friends.The picture at left is of Hosanna(Hebrew translation means “Save”)

CHSconnections:witnessinga miracleby Juanita Pickerl, Spruce Grove, Alberta

A

Hosanna on May 29, 2007 at about twelve months old

When I heard thewords ‘blood disorder’,I thought, “Well, wecan help with that!”

Dr. Man Chiu-Poon and Hosanna in September, 2007

when she first came to them. She wasabout 12 months of age and weighed lessthan 4 kg. Seeing Hosanna’s poor littlefrail body just made my heart ache. Myfriends sought medical attention for herin China to see if anything could be done.It took a few weeks to begin to get asense of what was wrong (take note folks– appreciate your access to your localclinic!). Finally, the word came that theybelieved this child had a blood disordercalled Beta Thalessemia Major. This meantthat Hosanna had a complete lack of beta

protein in her hemoglobin which causedlife-threatening anemia. When I heardthe words ‘blood disorder’, I thought,“Well, we can help with that!” From myinvolvement in the CHS, I knew thatthrough the World Federation ofHemophilia Dr. Man-Chiu Poon, Directorof our Southern Alberta HemophiliaClinic, had twinned his Calgary clinic withHematology Clinics in China.

What a differenceTLC and good medicalcare make! Take a lookat our little miraclenow! Only four monthshave passed and thechange in Hosanna isamazing!

H E M O P H I L I A T O D A Y W I N T E R 2 0 0 8 23t h e f e m a l e f a c t o r

FemaleFactor

by Patricia Stewart

The

An estimated 300,000 Canadianshave the gene that causes vonWillebrand disease (VWD), the most

common bleeding disorder. The inheriteddisorder affects males and females equally,however females have the extra problemsassociated with gynecological and obstet-rical bleeding (97% of girls and womenwith VWD consult for these specific prob-lems compared to 10% of the general

VWD in Women:RaisingAwareness,Changing LivesTraining weekendfor women

female population). While approximately10% (30,000 people) may experience med-ical problems related to bleeding, only 8%of this subgroup (2,500 people) are cur-rently registered at hemophilia treatmentcentres in Canada.

The Canadian Hemophilia Society pub-lished its first comprehensive book forpeople with von Willebrand disease, AllAbout von Willebrand, in 2000, andlaunched the VWD Public Awareness

Campaign in 2001 to help increase recog-nition of the symptoms of VWD and thusincrease diagnosis of people living withthis disorder. The Community EducationKit, a binder that includes a visual presen-tation and corresponding information, wasdeveloped as a tool for educating the pub-lic about VWD. The kit was sent out to allchapters, but follow-up evaluation in 2006determined that it was seldom used.

Enthusiastic participants at the VWD training workshop

continued on page 24

I emailed Dr. Poon and asked if hemight be able to help. And help he did!Dr. Poon kindly reviewed test results,helped confirm the diagnosis and put myfriends in touch with a Hematologist inChina who could treat Hosanna. Thetreatment for Beta Thalessemia Major isfrequent blood transfusions. The chal-lenge is that these frequent transfusionseventually cause iron-overload whichmust be further treated with chelationtherapy. Through Dr. Poon and his col-leagues in China, my friends were able topurchase appropriate medical equipmentand medicine and receive training toadminister daily chelation therapy forHosanna.

What a difference TLC and good med-ical care make! Take a look at our littlemiracle now! Only four months havepassed and the change in Hosanna isamazing! I am truly inspired by the loveand care my friends have shown this pre-cious little one. Thanks doesn’t fullyexpress the gratitude I feel for the caringand compassion graciously given by Dr.Poon and Dr. Jing Sun in China in every-thing they have done to save Hosanna’slife. I have deep admiration for them both!Lastly, I want to challenge each of youreading this article to become involved inyour Chapter of the CHS. Our volunteernumbers are small and we need you!Value the care you have and be preparedto support and share it with others. Younever know when you might become partof a life saving adventure!

Hosanna on September 30, 2007, after only 4 months ofproper medical treatment

“It was an excep-tionally joyful andfun event.”

H E M O P H I L I A T O D A Y W I N T E R 2 0 0 824 t h e f e m a l e f a c t o r

the kit. A broader goal of the trainingworkshop was to generate at least threeawareness activities in every province inthe coming year. On October 26-28, 2007,20 women from across Canada attendedthe VWD training workshop held inMontreal by the CHS. The goal of theworkshop, called VWD in Women: RaisingAwareness, Changing Lives, was to giveparticipants helpful public-speaking andpresentation skills towards educating thegeneral public and raising awarenessabout this common bleeding disorder.

Once someone has been properly diag-nosed, preventive treatment can make thedifference between having a simple med-ical procedure for a common surgery suchas tonsillectomy, or experiencing a severebleeding episode that can be life-threat-ening. The workshop began with personalaccounts from three women who spokeabout the medical problems they experi-enced due to lack of diagnosis. The next

day, Clare Cecchini, CHS ProgramDevelopment Coordinator, described CHSadvocacy efforts to meet the needs ofwomen with bleeding disorders.Participants also heard from Dr. RochelleWinikoff, hematologist at Ste. JustineHospital in Montreal, on the history, symp-toms and treatment options for vonWillebrand disease.

Another session featured tips on publicspeaking, by Teri Kingston of ToastmastersInternational. It was followed by a screen-ing of the visual presentation componentof the Community Education Kit.Participants then engaged in a hands-onsession, in which each person practicedgiving the VWD presentation before asmall group. The final day’s sessions dealtwith setting up an information kiosk.Groups were given time to set up an infor-mation table and practice their “sales pitch”to passers-by, including members of theCHS Executive Committee who were meet-ing at the same hotel.

Brainstorming sessions also took placeon potential target audiences and locationswhere information kiosks could be set up,with individuals exchanging experiencesand presentation tips. Participants alsodeveloped individual action plans for 2008.

The enthusiasm among participants wascontagious. Everyone was eager to learnhow to get the message across and helpincrease awareness and diagnosis to ensurethat people with VWD get the informationthey need to control the bleedingdisorder and change their lives.

The results were immediate.Shelley Mountain from PEI gavethree community presentationsand two newspaper interviews inthe weeks following the trainingworkshop. And, in December, infor-mation kiosks about VWD were setup by CHS volunteers at blooddonor clinics held in PEI and NovaScotia.

The community education kiton VWD isn’t a medical presenta-tion—it’s a simple tool with basicinformation on the disorder for thegeneral public. As someone livingwith a bleeding disorder, you’realready an expert. You can givethe presentation yourself, or sim-ply offer to help someone else setup a kiosk for a day. If you would

“One of thehighlights for mewas meeting otherwomen with VWD. Ihave only known myown sisters, and weoften felt very alone.I personally seldomdiscussed VWD withanyone but that willchange now.”

Shelley Mountain and her daughter, Valerie, four, both have vonWillebrand disease.

like more information about the VWDCommunity Education Kit or know of anygroup that might be interested in an infor-mation session, don’t hesitate to contactClare Cecchini at the CHS and she can putyou in touch with the person from yourchapter who attended the training work-shop. Your chapter may also be organizinga training day or a VWD information ses-sion in which you can take part.

Raising awareness about bleeding dis-orders can help change lives, improvingthe quality of life and health for thosewho are undiagnosed and untreated.Because they are inherited genetic disor-ders, having one family member diagnosedwith a bleeding disorder can lead to otherfamily members being diagnosed, thuschanging many lives.

“Practicing thepresentation inour groups made mefeel much morecomfortable withthe material.”

In addition, despite the publication ofTreatment Guidelines for Women withBleeding Disorders by the Society ofObstetricians and Gynecologists of Canada(SOGC) in 2005, women continue to goundiagnosed.

The CHS consequently decided toorganize a training workshop to familiarizeindividuals from CHS chapters on how touse the Community Education Kit to raisepublic awareness of VWD in their localcommunities, and to train others on using