On board at the 2010 Buenos Aires World Congress

4 HEMOPHILIA TODAY e d i t o r i a l p a g e sN O V E M B E R 2 0 1 0Wordfrom theEditorFrançois LarocheIwas privileged this summer to attend the XXIXInternational Congress of the World Federation ofHemophilia, held in Buenos Aires, Argentina, fromJuly 10 to 14.This biennial congress offers a remarkable opportunityto learn about the latest developments in anything andeverything related to bleeding disorders as well as achance to meet and talk to many of our partners. Everytime I attend this event, I am reminded of how lucky I amto live in Canada, where we can count on superior careand top quality treatment. This also pushes me to getmore involved in working to eliminate the inequalitiesthat still unfortunately persist between industrialized andemerging countries. Progress on this front is being madeevery year, which is reassuring and gives me hope that oneday effective treatment will be available for all. You canread the impressions of several CHS delegates whoattended the congress on pages 16-23.As for myself, I learned about one particularly promisingavenue at the congress. It is now possible to offer “tailormade”treatment for people with bleeding disorders byperforming a pharmacokinetic analysis of each plasma andrecombinant protein (coagulation factors). We are, ofcourse, only at the start of this new era, but it will soon bepossible to develop customized treatment regimens foreach individual with hemophilia using precisepharmacokinetic parameters (recovery, half-life,immunogenicity, etc.) that will help the medical teamsuggest a coagulation factor concentrate and treatmentplan matching his profile. This may lower the risk ofdeveloping inhibitors and result in more effectivetreatment, including prophylaxis. Stay tuned for furtherdevelopments... at a hemophilia treatment centre near you!On another note, it was with great satisfaction thatI learned of the decision, released September 9, inthe case of Kyle Freeman versus Canadian BloodServices (CBS) for which the CHS was granted intervenorstatus. In ruling that Kyle Freeman was guilty ofnegligent misrepresentation, Justice Catherine D. Aitkenrendered a decision that is very reassuring for all users ofblood and blood products. In the weeks and months thatpreceded this ruling, I had the feeling that the debatewas polarized around the prevalence of HIV and thesensitivity of the tests used by CBS and Héma-Québec toensure a safe blood supply. We know that thanks to thehigh sensitivity of the tests currently performed by thetwo Canadian suppliers of blood products theprobabilities of contracting HIV as a result of atransfusion are about 1 in 13 million per unit transfused.It’s a very low risk, and hence the basis of the gaycommunity’s main argument in claiming that theexclusion of men who have had sex with other men, evenonce, since 1977 is discriminatory. However, the risk ofcontracting an emerging pathogen with the same profile,that is, a pathogen that is blood-borne as well as sexuallytransmitted, has been completely ignored in the debate.Fortunately, Judge Aitken set the record straight: thepolicy banning blood donations from men who have hadsex with other men is not discriminatory by nature(because it is based on scientific facts and health andsafety considerations not on sexual orientation) andshould be maintained. After all, it was in this communitythat outbreaks of HIV and HBV were first observed in thelast few decades. We have every reason to believe anoutbreak of a pathogenic agent of the same type wouldtake an identical path. In ruling that donating blood is aprivilege and not a right, Judge Aitken endorsed theposition of the CHS, that the recipient of the bloodproduct bears 100% of the risk in blood donations. InJudge Aitken’s eyes, and ours, strong confidence in thesafety of our blood supply system is crucial for ourhealth system and for users. With this decision, we neednot fear loss of user confidence in our blood supplysystem. At the very least, this ruling sends the rightmessage. Check page 12 of this issue for more informationand to find out about the reactions of people at the CHS.In closing, it was with great sadness that I learned ofthe death of Ken Poyser on September 7, 2010. Hisinvolvement at all levels of the organization—provincial, national and international—as well as hiscrucial role in the founding of the Hemophilia ResearchMillion Dollar Club are to be highly commended. Ken wasa fighter, and a role model for many. My thoughts and myheartfelt sympathy go out to Ken’s family and friends. Seepage 14 for a warm tribute to Ken by Dr. Bruce Ritchie.

HEMOPHILIA TODAY e d i t o r i a l p a g e sN O V E M B E R 2 0 1 0 5Messagefrom thePresidentCraig UpshawAt the meeting of the Association of HemophiliaClinic Directors of Canada in May, my first officialmeeting as president of the CHS, I was asked whatmy vision was and what I wanted to accomplish. At thattime my response was that I needed to better understandwhat was important to the organization and its membersthrough the exploratory process of the CHS’ strategicplanning process.Leadership, vision, empathy and wisdom are allhallmarks of great leaders – strengths that someindividuals come to easily. As you will read in this issue,the CHS lost one of these leaders, Ken Poyser, onSeptember 7. In 1979, Ken was responsible for theestablishment of hemophilia treatment centres (HTCs) inAlberta and, as CHS president, helped other chapters pushfor comprehensive care. His vision led to the creation ofthe Hemophilia Research Million Dollar Club which,between 1984 and 1989, raised one million dollars fromthe hemophilia community.CHS has not lost sight of Ken’s vision and is focused onthe development of standards of care in collaborationwith the physicians, nurses, physiotherapists and socialworkers in HTCs. All those we consulted for the strategicplan have told us that comprehensive care should be thehighest priority for the CHS. Funding to secure a fullcomplement of personnel in HTCs is one key issue. Afuture issue may be access to the full range of factorproducts in sufficient quantity to continue prophylaxisinto adulthood.I am confident the strategic planning process willidentify comprehensive care as a key focus of theorganization. We will build upon Ken’s vision and lead thedevelopment of an audit process to help ensure all clinicscan deliver optimal patient care. Achieving this willrequire close national and provincial collaboration.In July in Buenos Aires, I had the opportunity to attendmy fifth Hemophilia World Congress. While attending aworld congress, you quickly realize how lucky you are tohave won the geographic lottery – to be born in Canadawhere we have comprehensive care and access to the bestfactor concentrates available.In the 22 years since my first congress, the number ofindividuals who have access to treatment has significantlyincreased. This was achieved not only through the work ofthe WFH but just as importantly through the advocacy ofpatients and families with hemophilia – the sameadvocacy that all CHS presidents have called on for thelast 57 years.What was also very apparent at this congress was theamount of research that is being done, not only by ourcorporate partners but also in academia. Thanks to Ken’svision, the CHS is doing its part to find a cure forhemophilia. The Hemophilia Research Million Dollar Clubhe spearheaded now has an endowment of $1.9 millionand, since reaching its initial goal of $1,000,000 in 1989,has invested more than 3 million dollars in research inCanadian labs. While a cure has yet to be found, progresshas been enormous. Those who have provided input intothe development of the CHS strategic plan have told usresearch is veryimportant for thecommunity.Like Ken, my visionis to see a cure forhemophilia. I know thisvision is shared by allthose who have a childwith a bleedingdisorder. It is my hopethat the chapters andthe national Board ofDirectors, who arerepresentatives of theirchapters, will decide tocollaborate to raise atThanks to Ken’s vision,the CHS is doing its part tofind a cure for hemophilia.The Hemophilia ResearchMillion Dollar Club hespearheaded now has anendowment of $1.9 millionand, since reaching itsinitial goal of $1,000,000in 1989, has invested morethan 3 million dollars inresearch in Canadian labs.least $100,000 per year for the next 5 years and increasethe Million Dollar Club’s endowment to $2.5 million.The strategic planning committee is looking forward toreceiving comments on this plan from the chapters andtheir members. Once approved, on November 27, nationalcommittees and chapters will develop annual work plansto collectively achieve the goals of the strategic plan.I am committed to working with the nationalorganization and the chapters to deliver on the goals ofthis plan and ensure that we further the vision of Ken andall those who have worked so hard since the 1950s whencare was so limited.We need only to look at young people with bleedingdisorders today to realize how far we have come, howsuccessful we have been as a Canadian family. Yet we mustnot forget the challenges we have faced and the peoplewe have lost (and continue to lose) to bleeding disordersand their complications.I am convinced that our bleeding disorder family acrossCanada will continue to be successful in advocating forthe delivery of exemplary care while we strive for a cure. Iam honored to be leading our community as we deliver onour vision and mission over the next few years.

6 HEMOPHILIA TODAY c o m m u n i t y n e w sN O V E M B E R 2 0 1 0CommunityNewsChapter Spotlight Southern Alberta RegionThe annual family BBQ at the zoo in June was a bigsuccess. Participants enjoyed the interactive games andhad fun learning about animals with antlers and recycling.As well as enjoying the barbecue, we participated in aPassport to well-being activity, chair yoga. Before leavingthe tent to visit the other animals in the zoo, we had aninterpretive talk and visit with a porcupine.A coffee and dessert evening was held in conjunctionwith the drawing of the Dare to Dream for a Cure prizefor Alberta. The winner was ecstatic! This year, theincentive prize for highest number of tickets sold wasawarded to Alberta as well. Hemophilia SaskatchewanOn June 12, Hemophilia Saskatchewan had its family BBQat Pike Lake Provincial Park. It was a chance for manyfamilies from throughout the province to get together for arelaxing, fun afternoon and catch up with each other. We alllook forward to this event again next summer.Hemophilia Saskatchewan’s family weekend, StrongerFamilies, Brighter Futures, was held September 10-12 inMoose Jaw. There were approximately 100 people inattendance. It was a wonderful weekend includingeducational sessions and discussions, family time, scavengerhunt, and a carnival. This event was extremely successful andwe look forward to holding this event again in the future. South Western Ontario Region (SWOR)Commemorative tree plantingOn August 29, the campers, staff, families and communitycame together at Camp Menesetung in Goderich, Ont., forthe planting of our commemorative tree to honour andremember those from SWOR and across Canada affected bythe tainted blood tragedy. As part of the closing ceremoniesof Pinecrest AdventuresCamp, we chose to remember.Eric Stolte addressedthose present and remindedus all that it is okay to besad and angry but that weneed to use these emotionsto work toward positivechange. Here is thebeginning and the ending ofhis speech:The tree that has just been planted is a special tree. Inthe program it’s called a Tree of Life. But today, I’d like tocall it a Remembering Tree. After today, we can come backhere to this spot and remember something special. Somethings are easy to remember, other things are hard. Somememories we like to think about. Other memories we like toforget, because they are about something sad. Butsometimes, these sad memories can be the most important!(…) So, this Remembering Tree will help usremember two things. It will help usremember a very sad time so that we’llcontinue to work hard so no one gets hurtsever again. It will also help us rememberthat in growing strong, we can use ourstrength to help others who don’t have whatwe have. Make sure you come here oftenenough so that this Remembering Tree cando its job of helping us remember these twovery important things.

HEMOPHILIA TODAY c o m m u n i t y n e w sN O V E M B E R 2 0 1 0 7Pinecrest CampIt was Sparta vs. Athens relived as Pinecrest AdventuresCamp went back in time to the ancient Greek Olympics.Visited by Zeus at our first campfire, campers wereintroduced to the warriors, gods and goddesses who wouldlead them in the tasks set for the days to come. The nextday Zeus created the teams and the games began.Together they met the challenge of playing Things in aBox Pinecrest Edition, participated in Pinecrest Idol, yelledtheir loudest for the glory of winning Run and Scream,and went face first into chili bread bowls for no-handsdinner. Whether staff,leader-in-training orcamper, everyonecontributes to makethis week anincredible success.Sincere thanks to theamazing staff whovolunteer their timeto make camp areality, to Paul, Charlie and Nick for their countlessplanning hours, and to the Camp Committee (Kevin, Lori,Keira, Mary Jane, Eric, Paul, Nick, Charlie and Terri-Lee).Just the GuysSeptember 17–19, boys ages 5-15 affected by aninherited bleeding disorder and their accompanying malerole models participated in the Wacky World of Sportsthemed Just The Guys weekend. The weekend provides theopportunity for participants to gain a better understandingof the diagnosis and to connect with other families.even the FIFA World Cup! The kids enjoyed an afternoon ofcrafts, games and activities. We would like to thank LeslieBauman and Lisa Shewchuk for all of their help andcoordination of the children’s activities. CWOR also extendsits thanks to Board members Dane Pedersen and IgorRistevski for their assistance in engaging the crowd, as wellas Shaun Bernstein and Lex Cloete-Zito for all of their helpand for representing Hemophilia Ontario youth at the event. Quebec Chapter (CHSQ)CHSQ summer campThe week of August 8-13 under radiant skies, 24 childrentook part in the CHSQ summer camp, which was held atCamp Trois-Saumons, near Saint-Jean-Port-Joli.Just one look at the children’s faces as they renewed oldfriendships and made new ones, at the teams of qualifiedstaff from both Camp Trois-Saumons and CHSQ, at thechildren’s joy in learning new things, and at their smilesand comforting hugs convinced us that this camp isimportant, even vital, for children with hemophilia.Our thanks to our volunteers: camp coordinator MaximeLacasse Germain for his outstanding work, and assistantcounsellorsEmily Blanchette and Louis-Charles Martin fortheir dedication.We would be remiss if we failed to thank Opération Central West Ontario Region (CWOR)Father’s Day programThis year, the Central West Region held its first Father’sDay program at the Royal Botanical Gardens in Burlington.Fathers, uncles, sons and grandfathers came out andenjoyed a day learning about geocaching and participatedin a treasure hunt. Everyone also got a chance to enjoy amarshmallow roasting session after all of the treasurehunting was done. The program provided the guys with achance to bond and experience hiking through the RoyalBotanical Gardens grounds. CWOR would like to thankBaxter and Bayer for their generous support.Summer BBQOn June 12, 2010, CWOR had its annual summer BBQ atMarineland. This year families gathered together andparticipated in an ice-breaker game to enhancenetworking for the group. Parents spoke to one another insmall groups about their children, bleeding disorders, andOur thanks also to nurses Claudine Amesse and GinetteLupien who accepted to spend a week with us at camp,teaching the children to self-infuse and ensuring the qualitycare they needed throughout the week.We would be remiss if we failed to thank OpérationEnfant Soleil, and our pharmaceutical partners whoprovided the funding that made this wonderful camppossible. Without all these individuals and partners, thecamp would never happen.

8 HEMOPHILIA TODAY c o m m u n i t y n e w sN O V E M B E R 2 0 1 0 Prince Edward Island ChapterThe Family ExpoOn June 20, 2010, Family Place, in partnership with theParent Support Network, hosted the biggest family-relatedexpo in PEI! A fantastic fun-filled afternoon that included:information & display booths, educational activities,princess/pirate dress up, Mother Goose reading corner, facepainting, cookie decorating, crafts for all ages, children’sminiature golf, Music Man, magic shows, UFIT Fitness,contests, door prizes and freebies!Shelley Mountain, vice-president of the PEI Chapter,staffed a booth for VWD awareness. Over 700 bandagedispensers were handed out along with lots of informationregarding the CHS.A newly diagnosed family with VWD was welcomed tothe booth and provided with information. They havebeen in contact with Shelley regarding further details ofthe disease and personal experiences. This family now hasthe ability to reach for support and feel a little lessanxious knowing there is a whole world out there ofpeople with this bleeding disorder.This was indeed an awesome event! We have reachedothers with VWD, provided support, information andguidance. This was a true success!Did the Canadian tainted blood tragedy have an impact on you,a member of your family or friend(s)? If it did and you areinterested in telling your story, we’d like to hear from you.The Canadian Museum for Human Rights (CMHR),currently under construction in Winnipeg, is seekingsubmissions of personal stories and experiences fromCanadians, which would help shape the permanentexhibitions and public programs of the Museum. Thestories will become part of the CMHR archive of oralhistories so that others can learn from the experiences.More information can be found on their Web site athumanrightsmuseum.ca/share-your-story.The CHS Manitoba Chapter and the Museum and havebeen in touch and agree on the significance of the taintedblood tragedy in Canada and worldwide from the humanrights perspective; and it appears to meet the criteria forthe CMHR. Stories can be presented in various formsincluding video or audio testimonies, written texts andphotos.The CHS would like to contribute stories to the CMHRabout the tainted blood tragedy by creating a package forsubmission – but for this project to be feasible, we need toensure we would have a sufficient number of testimoniesto contribute and therefore an adequate number ofindividuals to share their stories. We are therefore puttingout this call nationally to find out how many people wouldbe interested to share their stories, which in turn will helpus assess if we can move forward with this project or not. Ifenough people offer to participate, the project will goahead.This project offers the possibility of shining aninternational spotlight on blood safety issues and wouldenhance public awareness and education, as well as paytribute to those who passed away as a result of the tragedy.The honour this would bestow on those still living with theeffects of tainted blood and to the memory of those wehave lost would be immeasurable.If you would like to participate by sharing your story orto find out more, please contact Michel Long, CHS nationalprogram coordinator, at 1-800-668-2686 or atmlong@hemophilia.ca. – M.L.

HEMOPHILIA TODAY c o m m u n i t y n e w sN O V E M B E R 2 0 1 0 9Bon Voyage! Travelling with a Bleeding DisorderIn response to feedback from the bleeding disorder community, anew module of the Passport to well-being program, made possibleby an educational grant from Baxter, has been developed. The newmodule, called Bon Voyage! Travelling with a Bleeding Disorder, includestips on preparing for a trip, getting treatment when away from home,and guidelines for travelling with products and supplies among otherrelated topics.As with the other modules of the Passport to well-being program,it includes resources to enable chapters to deliver a workshop. Theseinclude a booklet and PowerPoint about travelling with a bleedingdisorder and guidelines for organizing a workshop on the topic.But this module has a little more to offer. It also includes a very usefulwallet travel card that contains information about how to access careand treatment when away from home. Among other things, andespecially to help globetrotters, the wallet card contains 16 key phrasesin English, French and Spanish that can be used in an emergencysituation. Here’s an example:I am having a bleed. Please give treatment with factorconcentrate (or desmopressin) immediately and investigate later.J’ai une hémorragie. Veuillez m’administrer du concentré defacteur (ou de la desmopressine) sans tarder et investiguezensuite.Estoy sangrando. Adminístreme de inmediato concentrado defactor (o de la desmopresina) e investigue después.It is hoped that the new module will help people with bleedingdisorders reduce the risks of travel so that they can enjoy their adventureto its fullest. The new module was launched in October at the NewBrunswick Chapter family weekend and at the CHS Youth Conference M 2 .For further information about the Passport to well-being program pleasevisit the CHS Web site or contact the national office. – C.C.

10 HEMOPHILIA TODAY c o m m u n i t y n e w sN O V E M B E R 2 0 1 0Academic Scholarship Recipients Mojtaba Khezry, Richmond Hill, OntarioCHS James Kreppner MemorialScholarship and Bursary ProgramIn an effort to bring young volunteers into the CHS,and in recognition that a sound education is ofutmost importance (particularly for those who mightnot be able to succeed in a vocation requiring strenuousphysical labour), the CHS offers the opportunity for thosewho qualify to receive a scholarship or bursary in theamount of $4,000 to attend a post-secondary institutionof their choice.To honour James Kreppner’s memory, the CanadianHemophilia Society Scholarship and Bursary Programhas been renamed the CHS James Kreppner MemorialScholarship and Bursary Program. James was a lawyer andlong-time volunteer and member of the CHS Board ofDirectors and a highly respected, articulate and exemplaryactivist who passed away in 2009 due to HIV andhepatitis C-related complications. The CHS James KreppnerMemorial Scholarship and Bursary Program is an on-goingtribute to honour James’ dedication, intelligence andcommitment to the CHS and community service.In 2010, the CHS was pleased to award $4,000scholarships / bursaries to seven outstanding applicants.The award categories are as follows: scholarship based on academic merit bursary based on financial need mature student bursaryThe CHS would like to acknowledge the generous supportof the sponsors of the 2010 CHS James Kreppner MemorialScholarship and Bursary Program. One academic scholarshipand one bursary were made possible by an educationalgrant from CSL Behring. Two academic scholarships, twobursaries and one mature student bursary were madepossible by an educational grant from Pfizer. – C.C.I am currently doing my M.Sc.Biophysics at the University ofGuelph; I am studying biofilm usingbiophysical tools such as atomic forcemicroscopy (AFM), small angle X-rayscattering (SAXS) and transmissionelectron microscopy (TEM). I amhoping my research with thesemodalities along with my course load will help me moveforward in scientific research as a career and eventuallyinto hemophilia-based research. I am honoured to be partof the TCOR Board of Directors, the Hemophilia Ontarioyouth group and last but not least to have input in ourquarterly publication, BLOOD matters. Finally I am gratefulto be one of the CHS 2010 scholarship recipients. Ryan Kleefman, Strathroy, OntarioEver since I was a young child, Ihave been interested in science andloved helping people. Some time nearthe end of elementary school, thatinterest narrowed to biology andchemistry and I decided that I wantedto become a family doctor. For severalyears now, I have dreamed of one daypursuing such a career. However, the road of education tobecoming a doctor is long and expensive. The scholarshipawarded by the Canadian Hemophilia Society will go along way to helping my dream come true. My heartfeltthanks goes out to the CHS and its sponsors. Michael-Justin (M.J.) O’GradyBurlington, OntarioI am 18 years old and I have severehemophilia A. Hemophilia has playeda crucial role in my development as aperson. It has helped me to becomevery active in a number of activitiesand organizations, particularly thehemophilia societies and YMCA CampWanakita.I will be attending Dalhousie University in Halifax inSeptember to study Engineering. I am very excited aboutthis new phase of my life. I want to sincerely thank the

HEMOPHILIA TODAY c o m m u n i t y n e w sN O V E M B E R 2 0 1 0 11Canadian Hemophilia Society for their support in awardingme the James Kreppner Memorial Scholarship. The moneywill go a long way in supporting me financially and willremind me that there are people who care about those ofus living with bleeding disorders and who support us in ourday to day lives.Bursary Recipients Sarah Doran, York, Prince Edward IslandMy name is Sarah Doran and I havebeen personally affected byhemophilia as I am a carrier. My father,Joe Doran and his brothers have beenactive in our PEI Chapter for a verylong time and in many ways they haveprovided me with strength anddetermination.I am currently in the Bachelor of Music Educationprogram at the University of Prince Edward Island,Charlottetown, PEI. I am very involved in music and havebeen for as long as I can remember. I enjoy playing thesaxophone, fiddle, singing and step dancing. There wasnever a doubt in my mind that I would do anything otherthan share my joy and gift of music by teaching it toothers.I would like to thank the Canadian Hemophilia Societyfor providing me with the opportunity to pursue my careeras a music teacher and continue my dream of doing what Ilove to do.I graduated from Bowden Grandview School in 2009 andhave taken the past year to decide what I wanted to study. Ichose Computer Sciences. I learned years ago that a careerdoing physical work would be very difficult and with myinterest in computers it would be a good fit. I start at theRed Deer College this fall for two years and then willtransfer to the University of Alberta to complete theBachelor of Science in Computer Technology program. Ihave several areas that I would like to explore for my career,one of them being with the police in computer forensics. Iwould like to thank the CHS for this scholarship; it will helpme to achieve my goals. Graeme Melcher, Uxbridge, OntarioI attend Queen’s University inKingston, Ontario, where I am enteringinto my third year of a history degree.I also serve as an editor of the Queen’sUniversity weekly humour paper,Golden Words, after having spent ayear and a half as a writer. During myhigh school years, I was able to playbass in several school bands, including a rhythm and bluesband that toured parts of Europe. I consider myself veryfortunate to be able to pursue one of my greatestpassions, Canadian history, as a subject. I hope to becomea university professor or a museum curator one day, or towork in any field involving lots of reading and writing.Mature Student Bursary Recipient Jeremy Lessmeister, Bowden, AlbertaI am 19 years old and was diagnosedwith severe hemophilia at 5 months ofage. There have been many physicalchallenges over the years including thedevelopment of inhibitors at 15 monthsof age. I started immune tolerancethrough the Northern AlbertaHemophilia clinic and fortunately wasable to overcome the inhibitors after about two years. I hadmoved further south shortly after that and have been withthe Southern Alberta Hemophilia Clinic ever since. I havetwo brothers. My older brother Andrew is not affected byhemophilia; however, my younger brother Mitchell, who isnow 12 years old, is affected. I hope I have been andcontinue to be a good example for Mitchell and that I amhelping to smooth the way for him. Song Lin, Whitehorse, YukonI have been fighting severehemophilia for more than thirty years.While living in China I had verylimited care and several timesexperienced life-threatening bleedsbut I survived, although with manyconsequences. After our immigrationto Canada, my wife and I chose theYukon to be our new home. We have settled down in thiswonderful country and, despite many difficulties such asweather and language, we hope that happier days are justaround the corner. I am enrolled in the BusinessAdministration program at Yukon College. I am honouredto have been awarded the CHS James Kreppner MemorialMature Student Bursary, which will help me a lot with mystudies. Thank you CHS!

c o m m u n i t yn e w s12 HEMOPHILIA TODAY N O V E M B E R 2 0 1 0Ontario Superior Court finds MSM donor deferral not discriminatoryCHS welcomes judgmentMontreal – September 9, 2010 – In the case ofCanadian Blood Services v. Freeman, MadamJustice Catherine Aitken of the Ontario SuperiorCourt found that the current blood donor deferral formen who have sex with men (MSM) is not discriminatory.It makes distinctions for reasons of health and safety, noton the grounds of sexual orientation.The Canadian Hemophilia Society (CHS), which acted as anintervenor in the trial, welcomed the decision. Responding tothe decision, Craig Upshaw, CHS president, stated, “Thisjudgment will support efforts to make the blood supply assafe as possible for Canadians who rely on it.”The 188-page judgment was released after 37 days oftestimony from seven expert witnesses, a large number ofother professional witnesses and eight months ofdeliberation. Dr. Bruce Ritchie was called by the CHS as anexpert.The case originated in 2002. Kyle Freeman had donatedblood on 18 occasions between 1990 and 2002; however,after the last occasion in June 2002, he informedCanadian Blood Services in an anonymous e-mail that hehad lied when responding to the questionnaire,specifically with regard to Question # 19, Male donors:Have you had sex with a man, even one time, since 1977?CBS was able to discover his identity and sued Freeman incivil court for negligent misrepresentation and damages.Freeman countersued CBS and Health Canada on groundsthat the question violated his right not to bediscriminated against based on sexual orientation, a rightguaranteed in Section 15 of the Canadian Charter ofRights and Freedoms.In addition to finding Mr. Freeman liable for damages,Justice Aitken made several other judgments:1. Canadian Blood Services is not bound by the Charteras it is not a governmental entity in nature.2. Had CBS been covered by the Charter Mr. Freeman’sCharter rights would not have been engaged. JusticeAitken states, “Blood donation is a gift. A gift isfreely offered, but must also be freely received orfreely declined. Canadian law has never recognized aduty or requirement to accept the gift of blood fromanyone.” Therefore, there is no discrimination whenthat gift is refused for reasons of health and safety.3. Had Freeman’s Charter rights been engaged, hiscountersuit would still have failed. Justice Aitkenfound that the MSM donor selection policy does notdiscriminate on the grounds of sexual orientation.She states, “I find the deferral is based on health andsafety considerations, namely, the prevalence ofHIV/AIDS (and other blood-borne sexuallytransmitted infections) in the MSM population.”4. A further reason the countersuit would have failed isthat Justice Aitken found no evidence the MSMdonor deferral perpetuates prejudice or stereotyping.Instead, she writes, “The opportunity to give bloodcannot be seen as a defining element of a person’sidentity, a fundamental aspect of a person’s worth oran important symbol of full membership in Canadiansociety. Only 3% of Canadians between the ages of18 and 71 donate blood.”5. Justice Aitken found that the specific objective of theMSM deferral policy is the protection of bloodrecipients from known, new and emerging pathogens.“It is beyond debate that protecting blood recipientsfrom the transmission of HIV and other such pathogensis an objective of pressing and substantial importance.”6. Finally, Justice Aitken ruled that, if she had found theMSM deferral was discriminatory, there wasinsufficient evidence presented at trial to justify theindefinite deferral currently in place. The threat ofemerging pathogens, however, must be consideredwhen establishing deferral periods for populations athigh risk for sexually transmitted infections.Pathogens may enter the blood supply and remainundetected or badly understood for many years.Justice Aitken makes this observation, “A deferralperiod… for MSM… in excess of 10 years might wellbe considered reasonably prudent in all thecircumstances to meet the objective of a safe bloodsupply.”In conclusion, Justice Aitken wrote, “The impact… of gayand bisexual men being denied the opportunity to giveblood… is not in the same league as the impact on a bloodrecipient who has to use blood or blood products in orderto survive or make life livable, and who is asked to acceptlower safety standards even though an adequate supply ofblood could be provided if higher safety standards wereimposed.”Justice Aitken also states, “It is of critical importance toour health system, and to the well-being of the users ofthat system, that a high level of trust in the blood systembe fostered.”“Such a decision helps build this trust,” Craig Upshawsaid. – D.P.

HEMOPHILIA TODAY c o m m u n i t y n e w sN O V E M B E R 2 0 1 0 13Compensation updateJohn PlaterChair of the CHS HIV/Hepatitis National CommitteeOne of the few remaining loose ends of taintedblood compensation is being tied up. During theCanadian Red Cross creditor arrangement proceeding,an amount of money was set aside to establish theMichael McCarthy et al (“Prison Blood”) HCV ClassAction Settlement. In court proceedings held earlierthis year, arrangements were established fornotification and administration of this fund. CrawfordClass Action Services has been appointed to assist theTrustee of the funds to determine eligibility for thissettlement. Some members will have recently receivednotice from Crawford about eligibility for thesettlement. The settlement deals with a very specificset of facts. As explained in the notice,“Please note: eligibility is very narrowly defined.Compensation is only available to those people whocan prove that they contracted hepatitis C fromfactor VIII concentrate produced by ConnaughtLaboratories Limited or Connaught Biologics Limitedbetween 1981 and 1984 bearing lot numbersbeginning with the numerals 36 and certain of theirfamily members. No claimant shall be eligible forpayment if they are entitled to compensation as aninfected person under the FPT 1986-1990Settlement.”Application forms are being made available with thenotices. All Claims Forms must be completed withsupporting documentation and provided to theAdministrator on or before March 31, 2011. If you havereceived such a notice you should use the informationin the notice to contact the Administrator of the Fundwith any questions. Anyone else with questions abouteligibility for this Prison Blood Settlement can contactme for further information. I can be reached at:John C. PlaterBarrister & Solicitor519-599-3093or john@plater.ca**Note - the confidentiality of e-mail communicationscannot be guaranteed.In other compensation news, June 30, 2010 was thedeadline for applications under both the Hepatitis CJanuary 1, 1986-July 1, 1990 Class Actions Settlement(the “86-90 Fund”) www.hepc8690.ca and thePre-1986/Post-1990 Hepatitis C SettlementAgreement (the “Pre-86/Post-90 Fund”)www.pre86post90settlement.ca. There are a fewexceptions to these deadlines so if you have missed thedeadline but still feel entitled, please follow up withthe relevant claims administrator as soon as possible.In the meantime, the CHS has learned that thePre-86/Post-90 Fund has stopped paying loss ofincome claims for the time being. Under the termsof the settlement that led to the creation of thePre-86/Post-90 Fund, money to pay out loss of incomeclaims was set aside in a separate fund. More claimshave been made against that fund than originallyexpected. However, the settlement agreement alsostipulated that if the loss of income fund weredepleted, an application could be made to the courts totransfer money from the main settlement fund to topup the loss of income fund. When contacted to discussthe situation, class action counsel David Klein indicatedthat an accounting firm has been hired to prepare anactuarial report on the status of the main fund. Thehope is that a recommendation can be made to thecourts by the end of this year that money can betransferred over to the loss of income fund so that lossof income payments can resume.Finally, readers are reminded that post-secondaryscholarships are available for students whose lives orfamilies were affected by the tainted blood tragedy.The National Endowment Fund Scholarship,administered by the University of Ottawa(www.loansandawards.uottawa.ca/Default.aspx?tabid=2687#endowment), was established as part of a pleabargain arrangement with the Canadian Red CrossSociety (CRCS). The CRCS pled guilty to a contraventionof the Food and Drugs Act and set aside money for thescholarships in return for the Crown dropping chargesagainst the charity for common nuisance and criminalnegligence causing bodily harm involving their role inthe tainted blood tragedy. Amounts of up to $3,000 areavailable to those who qualify.If you have any questions or concerns about these orany other tainted blood compensation schemes, youcan contact me at john@plater.ca.

c o m m u n i t yn e w s14 HEMOPHILIA TODAY N O V E M B E R 2 0 1 0In Memoriam Ken PoyserIt is with great sadness that we learned that Ken Poyser passed away onSeptember 7. Ken was an Honorary Life Member of the Canadian HemophiliaSociety and a pillar of the CHS. Ken was a director on the CHS National Boardfor 12 years. During this time, he held the CHS National Executive positions oftreasurer, vice president and president. Ken had a vision and was instrumental inthe development and implementation of the Hemophilia Research Million DollarClub. He had the foresight to recognize the road to a cure would have a positiveimpact on the lives of all individuals suffering from a bleeding disorder. Ourthoughts are with his family and his many close friends.Please find below a tribute from Dr. Bruce Ritchie who was Ken’s physician atthe Dr. John Akabutu Comprehensive Centre for Bleeding Disorders inEdmonton. – C.R.On September 7, Ken Poyser died after a long and brave struggle with liver failure, in the ICU at theUniversity Hospital in Edmonton, where he lived. He is survived by his wife Darlene and son Tony andfamily. Ken’s quiet contributions to hemophilia and the bleeding disorders were enormous.Ken worked tirelessly for the World Federation of Hemophilia before serving three terms as the VP Financefor the WFH, establishing the accounting system to manage the millions of dollars that flows through thatorganization. He was instrumental in keeping the WFH and the CHS on secure financial footing. In 1994 heestablished the WFH Web site.In 2005, Ken received the CHS first International Contribution Award for his work at the WFH andinternationally. See Hemophilia Today - Fall 2006 – page 5.Ken was a long-time member and tireless volunteer for the Canadian Hemophilia Society, before serving asCHS president. It was his single-minded drive that established the Hemophilia Research Million Dollar Club tosupport research in the bleeding disorders.Ken was president of the CHS Edmonton Chapter in 1977-1978 where he was able to secure the financialsupport for the establishment of the Edmonton Hemophilia Clinic, and home treatment. On November 4, 2008,Ken was recognized for starting the clinic and home treatment in Edmonton at the 30th anniversary celebrationof the clinic. His contributions were recognized in video conference calls from the former minister of Health,Gordon Miniely, and Peter Levine, the researcher whose paper in the NEJM provided the proof that hometreatment works. You can see those presentations at www.ualberta.ca/~britchie/achcn.html.Those who knew Ken were astonished by his energy and persistence. When, as a young man, he was unable tosecure a mortgage for a home for his wife and family because of his hemophilia, Ken started a constructioncompany and built his own home, along with hundreds of other homes in Edmonton. When confronted withbarriers to getting home treatment for his hemophilia, Ken petitioned his old friend and colleague from hisaccounting firm and then the Alberta Minister of Health, Gordon Miniely, to provide the funding to start theHemophilia Clinic in Edmonton. Although Gordon agreed in principle, it was not till he found himself on theagenda of a meeting of international speakers in Edmonton, where he was to make the government’sannouncement of the start of the clinic, that Gordon realized that Ken meant “now”. When Ken decided that theonly way to facilitate hemophilia research in Canada was to provide funding, he established the Million Dollarfund with his own money as the first contribution. Ken didn’t much like the word no.Kens’ local, national and international work was recognized when he was made a member of the Order ofCanada by Governor General, Michaëlle Jean, in December 2008.Ken would have been the first to say that it was the support and love of his wife and family that allowed himto accomplish as much as he did. He referred to Darlene as his “angel”, and meant it.Ken was one of my heroes. I will miss him deeply.Bruce

c o m m u n i t yn e w sHEMOPHILIA TODAY N O V E M B E R 2 0 1 015Congratulations toNichan Zourikianon a well-deserved honourOn July 14, 2010 in Buenos Aires,Nichan Zourikian,physiotherapist at the Sainte-Justine Hospital Hemostasis Centrein Montreal was awarded the WorldFederation of Hemophilia (WFH)Inga Marie Nilsson Award. Thisaward was created in 2000 inhonour of distinguished physicianand clinical scientist Inga MarieNilsson (1923–1999) of Sweden.Professor Nilsson was a pioneer in hemophilia researchand treatment. Her preventive approach to treatment,hemophilia prophylaxis, has become the guiding principlefor treatment centres around the world.The award is given to an individual or pair of WFHvolunteers who have contributed substantially withleadership and initiative to advancing the WFH mission toimprove hemophilia care, especially in emerging countries.It is presented every two years at the WFH WorldCongress. The award includes a monetary prize funded byProfessor Nilsson’s family and Octapharma. This prize isdirected in its entirety toward the WFH projectchampioned by the recipient of the Inga Marie NilssonUpcomingEventsCanadian Hemophilia Society▪ May 27-29, 2011 – Rendez-vous 2011. Medical andScientific Symposium, consumer workshops, and CHSAnnual General Meeting, in Calgary.Alberta Chapter▪ November 27, 2010 – Southern Alberta FamilyChristmas Party and AGM at the Royal Executive Inn inCalgary.▪ March 4, 2011 – Volunteer Appreciation Evening at theArt Gallery of Calgary.▪ Ongoing – Movie nights and zoo trips for youth. Theseare informal get-togethers – youths aged 14-26 arewelcome.For more information about any of these events, pleasecall 1-866-425-9851 (voicemail box 3).Award. Previous Canadian recipients of this award includeManitoban physiotherapist Kathy Mulder (2006) andDrs. Poon and Luke (2004).Nichan has been a leader in hemophilia careprovincially, nationally and internationally. At theprovincial level, he has participated in numerousworkshops such as the Quebec Chapter family weekends.Other physiotherapists in hemophilia care within Canadalook up to Nichan for his guidance and expert opinion. Hehas participated in CHS working groups for the Passport towell-being program and the National Family Inhibitorworkshops and assisted with the development of variousCHS publications such as All About Inhibitors and AllAbout Hemophilia. He has been a co-author on severalgroup-published articles in Haemophilia, the WFHnewsmagazine.Internationally, Nichan Zourikian has been a member ofthe WFH Musculoskeletal Committee for more than tenyears. As a member of the International Prophylaxis StudyGroup, he helped co-develop the Hemophilia Joint HealthScore. He has presented at many WFH World Congressesand has volunteered for WFH twinning and educationprograms. He prepared and presented physiotherapyhemophiliaworkshops in many emerging countries:Senegal, Lebanon, Armenia, Georgia, Bosnia, Serbia,Romania, Tunisia, Syria, Jordan, China, Moldova,Macedonia, Albania, Belarus.The CHS would like to congratulate Nichan on thishighly-deserved recognition. – C.R.Hemophilia Saskatchewan▪ December 4 & 5, 2010 – Old Elephant’s Christmas inSaskatoon.▪ December 5, 2010 – Family Christmas Party at theRadisson Hotel in Saskatoon.▪ December 11, 2010 – Old Elephant’s Christmas in Regina.South Western Ontario Region (SWOR)▪ November is Bleeding Disorders Awareness Month atSWOR. Contact the office to run a Red White and Youevent and help raise awareness of what it’s like livingwith an inherited bleeding disorder.▪ November 20, 2010 – Winter Celebration at StrathroyDistrict Christian School in Strathroy, Ontario. Patiopots, swags and wreaths fundraising sale.Quebec Chapter (CHSQ)▪ December 2010 – Launch of the New Blood fundraisingcampaign.▪ December 4, 2010 – Recognition evening for staff andvolunteers.▪ March 25-27, 2011 – Family weekend and AnnualGeneral Meeting.

16 HEMOPHILIA TODAY H e m o p h i l i a 2 0 1 0 W o r l d C o n g r e s sN O V E M B E R 2 0 1 0World Congress 2010 – OverviewThis year, South America was the host of the Hemophilia World Congress. It took place in the city ofBuenos Aires, Argentina. Delegated by the CHSQ, I had the opportunity to interact with participants from theinternational community on the topic of bleeding disorders. A wealth of information was available during thisfive-day event. The following is an overview of key topics presented at the congress sessions.BLOOD SAFETY AND SUPPLYPharmaceutical companies andregulatory agencies in developedcountries around the world usewhat are considered state-of-theartscreening processes tomaintain a safe blood supply.Nevertheless, emerging pathogensmay lie undetected for a certainperiod of time before symptomsin patients lead specialists torealize there may be an issue thatneeds to be looked into. Vigilance,by the blood agencies around the world, blood safetycommittees and pharmaceutical companies, is key.INHIBITORSOver the past 20 years, the bleeding disorder communityhas observed an increase in recombinant products usagealong with a steady consumption of plasma-derivedproducts. During this 20-year span, inhibitor casesamongst patients have been on the rise. An upcomingstudy called SIPPET will enrol 300 patients from differentparts of the world and will try to establish whether theincrease in inhibitor cases is due to the use of recombinantproducts or caused by increased sensitivity of the inhibitortest itself, or a combination of both.HEPATITIS C / VIRAL INFECTIONSNew drugs coming down the pipeline look beneficial inincreasing the likelihood of eliminating hepatitis C (HCV)in genotype 1 and 4 infected patients but have theirdrawbacks. Researchers testing these new drugs indicatethe potential for different secondary symptoms from thecurrent Peg-Interferon treatment and in certain cases,potentially a conflict with HIV medication in co-infectedpatients.Martin Kulczyk, Montreal, QuebecFrom left to right : Diane Cunning, Nova Scotia Chapter, MartinKulczyk and Anna Bizunowicz, Quebec Chapter.For variant Creutzfeldt Jakobdisease (vCJD), the only companythat stated these past months thatit was close to delivering acommercial test for detecting vCJDwill not go forward as planned dueto a few cases of a failed detectionof infected samples in laboratory.YOUTHHemophilia organizations aroundthe world face similar challengesin recruiting new youngvolunteers. It is generally recognized that electronic mediais the way of the future for reaching out and involvingyouth. Nevertheless, this is only a tool. There needs to be awill to gather together. The unfortunate reality is that inmany cases, major tragic events are the catalysts that bringpeople together (blood contamination in the 80s and morerecently the death of an individual with hemophilia inEurope due to language barriers between the patient andmedical personnel). Let’s hope, as a global community, thatwe will find more casual and positive ways to involve youth.WOMEN AND BLEEDING DISORDERSThe WFH has made reaching out to women affected bybleeding disorders one of its key actions. In the past,carriers were not considered symptomatic but recently,more emphasis has been given to the importance of properdiagnosis and treatment especially with female milestonessuch as pregnancy and childbirth. Discussions with healthprofessionals and being informed are important towardsensuring the patient’s wellbeing and quality of life.The delegates from the CHSQ are producing a package (Editor’s note:an informative slide show) which will be available on CHS Web site.The CHSQ will notify its members once the package is online.

H e m o p h i l i a 2 0 1 0 W o r l d C o n g r e s sHEMOPHILIA TODAY N O V E M B E R 2 0 1 0 17Anna Bizunowicz, Montreal, QuebecCongress 2010 is an international event in thehemophilia world which took place in Buenos Aires,Argentina from July 10 to July 14, 2010. BuenosAires is not only the capital of Argentina, it is the city oftango and many cultural events. Many topics weretouched upon and discussed in comprehensive manners.For the opening ceremony, the welcome message camefrom the WFH President Mark Skinner and CongressPresident Dr. Raul Pérez Bianco.A very interesting research on Gene Therapy forImmune Tolerance Induction brings hope for hemophiliapatients even in the presence of inhibitors. Although genetherapy is not yet sufficiently developed for clinical use, itmay offer future hope for success. Strategies beingexplored include alternative routes for delivering factorsuch as the liver, skeletal muscles, skin fibroblast,hematopoietic stem cell, endothelial cells and others.More studies need to be done in laboratories on animalmodels before advancing.Various aspects of coagulation factors and prophylaxiswere discussed in relation to the economic recession, therisk of increasing bleeds, the fact that coagulation factoris not available to all patients with hemophilia and, whenavailability is limited, should sports be considered a“luxury” activity?The benefits of an aquatic training protocol for peoplewith hemophilia were discussed, particularly the reducedrisk of cardiovascular morbidity and mortality (CVMM).Aquatic training positively influences cardiovascular andphysical condition, improves aerobic capacity and reducesthe CVMM risk.Exercises have therapeutic and in all manners greatimpacts for people with hemophilia. They strengthenmuscles and joints, improve flexibility, balance the body,and clear the mind. We have so many different types ofexercises – aerobics, muscle development exercises,swimming, etc. The key is to choose one that suits youbest. In my case, during my great time at the Congress, Iwas introduced for the first time in my life to Tai Chi. Itried some exercises which were led by Masajes FernandoCastineria. I also received the book Teach Yourself Tai Chiby Robert Parry with information about the nature andbenefits of Tai Chi, with exercises and all movementsshown and described in an understandable way.There was also a great deal of time dedicated to thesubject of Women and Bleeding Disorders. Althoughwomen are rarely affected by hemophilia, they are still aslikely as men to be affected by a bleeding disorder. Heavymenstrual bleeding is the most common symptom thatthey experience. Women with bleeding disorders are at anincreased risk of developing ovarian cysts and possiblyendometriosis.There were many other topics discussed during Congresssuch as vCJD, hepatitis C, pharmacovigilance/surveillanceand why we need it, and viral pathogens, to name just a few.Participating at the Congress was a great experience forme. I want to thank my son Martin Kulczyk for inviting meto participate in the Congress and all participants forbeing great. I was able to share feelings and emotions withothers as one community.

18H e m o p h i l i a 2 0 1 0 W o r l d C o n g r e s sHEMOPHILIA TODAY N O V E M B E R 2 0 1 0The importance of beingglobally aware about hemophiliaG.A. (Sandy) WatsonNova Scotia Chapter past-president, Dutch Settlement, Nova ScotiaSeveral years ago our provincialchapter looked at ways that theycould improve the knowledge ofmembers and be more conversant inhemophilia and bleeding disorder issues.It started by more actively spreading itswings into both the CHS and the WFH.Our membership wanted informationon the latest trends in terms ofstandards of care, procedures, productsSonia and Sandy Watson.and other topics relevant to their needs.Many of us were adept in our knowledge of our ownsituations. However, we were aware that our knowledge was,at times, limited to regional issues and solutions, with verylittle knowledge of hemophilia on a world level. Thus in 2006the Nova Scotia Chapter decided to start sending delegatesto the Hemophilia World Congress, who would bring backinformation to the chapter so that all would have theopportunity to learn. Since then, there have been over adozen members who have attended a World Congress. Ten inVancouver in 2006, one in Istanbul in 2008 and three inBuenos Aires in 2010. Each and every year resources are setaside to send an active/contributing member to the WorldCongress and, given that it is held every two years, at leasttwo members from the Nova Scotia Chapter can attend.Planning for the 2010 congress began in 2009 and asdelegates we focused on what ‘sorts’ of issues wereimportant. We knew that while we were in Buenos Aires wewould have a lot of support as the contingent from the CHSand other chapters was, relatively speaking, sizeable. (Wewere delighted to have so many other happy Canadianssmiling back.)As the days drew near to the congress and Diane, Soniaand I made more detailed plans, a sense of anxiety grew. Atfirst I thought it was the lingering thought that I reallydidn’t want to be in Buenos Aires on July 12, midconference,if Argentina won the World Cup (knowing thatI’d be attracted like a moth to the ‘party’ flame). Then Irealized that the pressure was more to ensure that we didwhat we told the membership we would do, and, clearlydemonstrate that being part of the global efforts isimportant. After all, there were others who wanted to go.Notepad packed in our carry-on luggage, agenda in hand,mind and eyes open, and ears perked, all three of us wereready to learn and return.With over 4,300 attendees the event was a bitoverwhelming. We split our efforts sothat between the three of us we couldhave the most coverage possible. Wenetworked with people across theworld and learned of their efforts. Theexperience made me realize onceagain how lucky we are to beCanadians, to have a formidablehemophilia society, to have access tothe highest quality of care andtreatment, and to receive such strongsupport from our pharmaceutical partners.One project that I have been assigned by the Nova ScotiaChapter is the creation of a solid set of by-laws and otherinstruments to operate on a more formal basis. I metparticipants from the United Kingdom, New Zealand, theCHS Manitoba Chapter, and two associations in the UnitedStates, obtained their perspectives, ideas and newinformation about many issues. I learned how to be humbleand to better understand the challenges and painexperienced in less developed countries and how they coulduse our help. Yet, conversely, I also learned to appreciatethat I could learn as much from them considering some ofthe techniques that they employ to care for someone with ableed with little or no access to medication.The Congress allowed me the opportunity to learn andshare ideas on issues at a global level. It made me realizethat global issues are shared collectively and that we mustmake efforts individually across the world, stay in touchwith one another, and support each other knowing thathemophilia affects more people than simply my provinceor country. It let me also understand the CHS’ connectionto the WFH and the importance of participation at thelocal, national and international levels.Since our return we have distributed material collectedat Congress at our AGM; our president has been busycontacting people we met there to share information andhelping to strengthen our provincial chapter. I believe thatthe WFH Congress is an exceptionally worthwhile venuefor meeting people from across Canada and around theworld to discuss the challenges faced by those withinherited bleeding disorders. As a father of a son withhemophilia, I am thankful for what I have and what I havelearned. A World Congress such as the one in Buenos Airesis a rare opportunity, one that I hope in the years to come,will be accessed by more.

H e m o p h i l i a 2 0 1 0 W o r l d C o n g r e s sHEMOPHILIA TODAY N O V E M B E R 2 0 1 0 19Shining the spotlight on AfricaCandace Terpstra, TCOR twinning volunteer, Stratford, OntarioTreatment for All is the vision for all who are part ofthe global network of hemophilia organizations inthe World Federation of Hemophilia (WFH). Many ofus as volunteers in the Canadian Hemophilia Society haveworked very hard over the past few decades to achieve, incollaboration with our medical partners, the high standardof care that people with bleeding disorders experience inthis country. In many parts of the world, our brothers andsisters experience far less in the way of hemophilia care.I came away from the 2010 Congress feeling inspired andready for action. We as Canadians are privileged membersof a larger family – a worldwide family.With that privilege comes responsibility.In his opening address at the Congress,Mark Skinner, president of the WFH,spoke of four specific strategies foradvancing the goal of Treatment for All.One strategy is the need to expand thenumber of national memberorganizations in Africa where only 15 of53 countries are represented in theFederation. Ethiopia, Ghana and Tanzaniaare the most recently accredited membersto become NMO’s at this year’s Congress.The strategy is to build a core centre ofexpertise within each of three regionalcentres in sub-Saharan Africa – Kenya inthe east, Senegal in the west and SouthAfrica in the south – to deliver improved diagnosis andcare, effective training and capacity building for bothhemophilia centres and hemophilia organizations. From aneconomic standpoint, as reported in The Economist (June 9,2010), Africa was once dubbed the hopeless continent.But this seems to have turned around with inflation fallingfrom 22% to 8% and business opportunities improving notonly in the resource sector, but also in the production ofinnovative new products, products such as the Q-drum,which allows for the transport of water by rolling thisproduct along the ground. McKinsey reports that livingstandards are on the rise, which can mean only goodthings for the people in these countries, including ourbrothers and sisters with bleeding disorders.Foundational programs like twinning are effective toolsfor building capacity and expertise in medical diagnosisand care, and for building the advocacy skills and abilitiesof hemophilia organizations to promote improved care andtreatment for patients with bleeding disorders. As you mayknow, the Toronto and Central Ontario Region (TCOR) inthe Hemophilia Ontario Chapter of the CHS was twinnedwith the Jordanian Hemophilia Society in the Kingdom ofJordan for approximately five years. A medical centretwinning under the leadership of Dr. Bernadette Garvey ofSt. Michael’s Hospital, Toronto, also formed part of thisdouble twinning. As a result of our combined efforts, therehave been huge improvements in hemophilia care in Jordanincluding: increased availability of factor, the developmentof two hemophilia treatment centres in north and centralJordan, training of many health care professionals as wellas patients and their families, and the building of a stronghemophilia patient organization withprograms for mothers and youth. In thecoming years, the Jordanian HemophiliaSociety will be working to make factoravailable for home treatment. Thisconstitutes a massive change from pretwinningdays when cryoprecipitate orplasma, if available, were used in a hospitalsetting to treat bleeding episodes.While at the Congress, I met a numberof people from African countries seekingtwinning partners in establishedcountries. As an established twinningpartner, your support in the form ofinformation, training and education willbring hope and build the enthusiasmneeded to grow a strong hemophiliaorganization. When twinning is combined with the tools ofthe WFH such as humanitarian aid, data collection, publicaffairs and fellowship training, educational materials andworkshops in combination with the Global Alliance forProgress (GAP) project, there is much that can beaccomplished with this type of real support. Some 60 yearsago, the Society started this way in Canada – patients andfamilies coming together to support each other in aconcrete way. Hemophilia organizations around the worldcome out of this same history.Twinning can accomplish great things. At first glance, theinitial goals of a twinning partnership may appear small andinsignificant but they are great in the minds and hearts ofthe recipients of your support. Countries in Africa waitingfor your participation include Nigeria, Tanzania, Botswana,Ivory Coast, Cameroon, Ghana, Sudan and Lesotho. If yourhemophilia organization is interested in participating inshining the spotlight on Africa and you would like to explorethe possibility of twinning with an emerging country, pleasecontact the World Federation of Hemophilia.

HEMOPHILIA TODAY H e m o p h i l i a 2 0 1 0 W o r l d C o n g r e s sN O V E M B E R 2 0 1 021Karttik Shah Youth Fellowship recipientsCameron Peters, Hamilton, OntarioIattended the 2010 HemophiliaWorld Congress in Buenos Airesin July 2010 as a youth recipientof the Karttik Shah Fellowship.Through my experiences atCongress, I learned a number ofthings that I will be able to use inmy work with Hemophilia Ontario.First, I engaged with the broaderhemophilia community in Canada.Having not attended a national orinternational event before, the congress allowed me tomeet with leaders in our community from across thecountry and to share experiences and ideas on how tomeet the needs of our membership. Sharing ideas andexperiences with others from across Canada has led me tonew ways of viewing issues in my work in Ontario. I betterunderstand how research is done in Canada and how theCanadian Hemophilia Society and its provincial chaptersinteract with health professionals across the country.These important aspects of our organization could onlyhave been learned through attending Congress.Second, the Congress was an excellent opportunity tolearn about the latestI better understandhow research isdone in Canada andhow the CanadianHemophilia Societyand its provincialchapters interactwith healthprofessionals acrossthe country.advancements in areas thatrelate to my particular healthchallenges. Experts onhepatitis C provided an updateon the future of treatments. Inparticular, protease inhibitors,likely to be available in thenext few years, are expectedto significantly improvetreatment outcomes,particularly for those affectedby genotype 1 hepatitis C.Physiotherapists andorthopedic surgeons presented studies on total jointreplacement of ankles, which is still considered to a rathernovel therapy, as ankle fusion remains the preference formany treatment centres in the developed world.Third, I was able to meet other youth delegates andshare experiences with them about our health difficulties.There were dozens of youth delegates from all over theworld at the conference, and meeting them provided adifferent perspective on how their NMOs work to helpindividuals affected by bleeding disorders. For example,I spoke with a youth delegate from Latvia, who is currentlyinvolved with her NMO in helping people with hemophiliawith court cases contesting the government’s decision torestrict funding for treatment. Also, I spoke with manyyouth from North Africa, where they battle chronicshortfalls in factor products and thus are involved inrationing factor among themselves to ensure that at leastthose who are in a crisis situation receive factor.Finally, being exposed to people and medicalprofessionals from around the world presented me with anew way to understand the issues that individuals withbleeding disorders experience. The level of care that wehave attained in Canada, that most of us take for granted,is clearly not the standard that the majority of people withbleeding disorders worldwide receive. Learning aboutdifferent experiences, particular from developingcountries, has enriched my life as a person living with ableeding disorder. These different perspectives show usthat we are fortunate, but they also show us that there ismuch work to be done at the national and internationallevel to support improved treatment and care for peoplewith bleeding disorders, particularly in developingcountries. In sum, by being able to attend conferences likeCongress, I have learned to bridge the gaps by raisingawareness and developing links between people, programsand resources around the world.Maxime Lacasse Germain, Montreal, QuebecFirst of all, I met with youthgroups from all over theglobe. It allowed me to discussactivities that we were doing andissues that we were struggling with.We were able to compare ourpractices to better improve it.Meeting all those youths created anall-new network that will probablyencourage partnerships betweencountries. Between Norway, Austria,Australia, Iran, Netherlands, Latvia, Spain, U.S. and NewZealand, we shared wonderful experiences. It was for meone of the major highlight of congress.From the perspective of a Youth Committee member, Ialso attended the “Young Voices” conference, whichpresented the importance of training the next generationof leaders. It was very informative. How do we get youths(continued on page 22)

22 HEMOPHILIA TODAY H e m o p h i l i a 2 0 1 0 W o r l d C o n g r e s sN O V E M B E R 2 0 1 0My impressions of the Congress in Buenos AiresDavid Pouliot, Montreal, QuebecIn July, I took part in theHemophilia 2010 WorldCongress. The last timea similar congress was heldin Argentina, I was a yearold; that was 25 years ago.While it was a return visitto Argentina for the WorldFederation of Hemophilia(WFH), it was my first timein the country.On the opening day ofthe congress, I was thrilledto learn that youth—orthe next generation assome call us—would beone of the three topics that WFH President Mark Skinnerwould address in his plenary speech. The two other equallyimportant issues were women with bleeding disorders andthe countries of sub-Saharan Africa. Now that I’verevealed my age, I’m sure you won’t be surprised to learnhow pleased I was with this news. The important placegiven to the “next generation” is now being recognized atall levels: in Quebec, in Canada, and around the world!How does the WFH hope to convince the nextgeneration of the importance of volunteering in theircommunity? While the answer is far from clear, initiativesare beginning to appear. The use of new technologies 1 andcommunication tools, leadership development programs,grants to attend congresses (such as this one), and gamesand publications aimed at youth are the broad strokes ofthe current strategy.As for the congress asa whole: over the fivedays, I attended excellentpresentations on medicalimaging, rare bleedingdisorders, cost-efficiencyratio studies related tothe treatment ofhemophilia, aging withhemophilia, moderatehemophilia, hepatitis C,youth groups worldwide,prophylaxis, and evensexual health!The congress is notonly a good source ofinformation but also an opportunity to share experiencesand knowledge, to learn from others and to meet up withold friends again, like the people from the TunisianHemophilia Association. We even made a satisfactoryinitial contact with the president of the Syrian HemophiliaSociety in anticipation of our next twinning opportunity.These meetings are the source of lasting friendships.I should end by saying that Buenos Aires is a beautifuland artistic city with wonderful places to dine. Thank youso much to the CHSQ for allowing me to have such awonderful experience.1During the congress, the WFH launched a Netcast video(www.wfh.org/TFAseries) that recounts the life of twohemophiliacs living in very different parts of the world:Vaibhav Nehra from India and Paul Wilton from Canada.Maxime Lacasse Germain (continued from page 21)to be involved in activities – and also in the planning andorganizing of events? How do we approach today’syouths? What are the pitfalls when organizing a youthgroup? How can we use effectively the social media topromote our activities? All of these questions wereaddressed at the conference. This will be useful for thefuture of our committee.The content of the sessions of the world congress wasvery diverse; from tai chi applied in physiotherapyrehabilitation to new procedures in dental extractions andnew research in genetics, my personal knowledge improveda lot. It was also an eye-opener about the situation ofhemophilia around the world. I think we are extremelylucky to have these current standards of care in Canada.This congress showed that we can make changes, small andbig, in term of treatment and quality of life.I want to thank the CHS for allowing me to be part ofthis event through the Karttik Shah Youth Fellowship. Iencourage each one of you to apply for the next congresswhich will take place in Paris in 2012. Isn’t it exciting?

28 HEMOPHILIA TODAY v o l u n t e e r f i l eN O V E M B E R 2 0 1 0VolunteerFile“Volunteers do not necessarilyhave the time; they just havethe heart.”–Elizabeth AndrewMarion StolteChair, NationalVolunteerDevelopmentCommitteeCanadian Administratorsof Volunteer ResourcesVolunteers have the heart and careabout increasing their ability to dotheir volunteer work well. In fact, they taketime to attend conferences or workshopsthat will improve their abilities and comeback to their chapters excited andempowered to work even harder for thechanges that are necessary.Canadian Administrators of Volunteer Resources (CAVR) ConferenceTwo volunteers from Newfoundland and Labrador took time in June to attend the Canadian Administrators of VolunteerResources (CAVR) Conference to learn more about this area:We would like to thank the CHS for sponsoring us to attend the CAVR Conference. We were amazed at the largenumber of volunteers that we have here in Canada. We really enjoyed the workshops; they were all amazing andeducational. We had the opportunity to network with a lot of interesting people from all over Canada. We also receivedinformation to help us gain volunteers within our chapter.Volunteering with the CHS has been very rewarding, we love helping others, learning new information, meeting newpeople, making friends and having fun. We encourage all of you to become involved with your local chapter. We are reallyglad that we did!– Cindy Casey and Ruby Locke, Newfoundland and Labrador ChapterGeneviève Beauregard, program coordinator for theQuebec Chapter (CHSQ), also had the chance of attendingthe CAVR conference; you can read her thoughts about it.Report from Geneviève BeauregardLast May, I had the great pleasure of participating in atraining conference offered by the CanadianAdministrators of Volunteer Resources (CAVR). Volunteersare crucial to non-profit organizations, and thisconference offered a wealth of invaluable resources.Believe me, I came back inspired!On the first morning, we had the chance to listen tovarious speakers. To name a few, we heard from RuthMackenzie, president of Volunteer Canada and DawnChafe, editor of Atlantic Business. Charlotte Courage, ayoung, devoted, passionate volunteer involved in manycauses and organizations worldwide, was without a doubtthe speaker that impressed and touched me the most. In2007, Charlotte received the Canadian Red Cross YoungHumanitarian Prize. How inspiring!The second day was even more rewarding. It startedwith a workshop on corporate engagement, where Ilearned that our vision must be the primary message weare sending out to the world and that organizations aswell as volunteers benefit from a well-developed volunteerprogram with clear jobdescriptions. Next,Charlene Dishaw’sworkshop, Creating JobSatisfaction andOrganizationalCommitment in Volunteers,confirmed that our CHSQvolunteer recognitionprogram is as strong as it can be but we need to continueour efforts to attract new volunteers. We are not the onlyones in this situation. I found it very interesting to talkwith other participants about various tools and strategieswe have used, and exchange information on a wealth ofother topics. In the afternoon, I participated in twoworkshops: Measuring the Performance of Your VolunteerProgram by Tony Goodrow and Volunteer ProgramVisioning by Stephanie Smith. I returned with a lot ofgreat ideas and information that will be helpful to me andto the organization.Leadership, enthusiasm and opportunity were all valuestransmitted to participants. I would like to thank the CHSQand the CHS for allowing me to participate in thisconference. I encourage you all to do the same if you everhave the chance.

HEMOPHILIA TODAY t h e b l o o d f a c t o rN O V E M B E R 2 0 1 0 29TheBloodFactorDavid PageCHS National Executive DirectorBreakthrough in factor IX productsIn July at the World Federation of Hemophilia Congressin Buenos Aires, Argentina, Biogen Idec and SwedishOrphan Biovitrum announced exciting results from aPhase 1/2a study of the companies’ long-lasting,recombinant factor IX concentrate to treat hemophilia B.The technology binds the factor IX molecule to ahuman immune globulin molecule, creating an Fc fusionprotein. The data showed that rFIXFc was well toleratedand demonstrated an“Current prophylacticregimens for hemophilia Brequire intravenousinjections twice per week,so there is great desireamong physicians andpatients for a therapythat will provideprolonged protectionfrom bleeding,”almost three-foldincrease in half-lifecompared to existingtherapies.“Currentprophylactic regimensfor hemophilia Brequire intravenousinjections twice perweek, so there is greatdesire amongphysicians andpatients for a therapythat will provideprolonged protectionfrom bleeding,” said Amy Shapiro, M.D., medical directorof the Indiana Hemophilia and Thrombosis Center.“Results from the Phase 1/2a trial show that rFIXFc maybe able to reduce the number of injections to once weeklyor less, which would be an important advancement forthe hemophilia community.”Pre-clinical studies in mice, rats, monkeys and dogsshowed anywhere from a three-fold to a six-fold increasein factor IX half-life. In humans who took part in thePhase 1/2a study, half-life was increased on average from19 to 52 hours. In another promising finding, the recoveryappears to be higher than in other recombinant factor IXproducts and more similar to plasma-derived preparations.Recovery is measured as the amount of clotting factorconcentrate a person’s body can use compared to theamount infused.Based on these positive results, rFIXFc advanced inJanuary into a global Phase 3 trial called B-LONG. B-LONGis designed to assess the safety, pharmacokinetics and efficacyof rFIXFc in the prevention and treatment of bleeding in 75previously-treated people with severe hemophilia B. SeveralCanadian centres are participating in the research.Using the same proprietary technology as rFIXFc, BiogenIdec and Swedish Orphan Biovitrum are also developing arecombinant, long-lasting Factor VIII Fc fusion protein(rFVIIIFc) for the treatment of hemophilia A. Thecompanies recently announced their decision to advancerFVIIIFc into a Phase 3 trial based on positive results from aPhase 1/2a. For more information on the rFIXFc andrFVIIIFc trials, see www.biogenidechemophilia.com orwww.clinicaltrials.gov.Canadian study results point to importanceof early prophylaxisIn a plenary talk at the World Federation of HemophiliaWorld Congress, held in Buenos Aires, Argentina, in July,Dr. Victor Blanchette, chief of the Division ofHematology/Oncology at the Hospital for Sick Childrenand Professor of Pediatrics at the University of Toronto,presented results of the Canadian Hemophilia ProphylaxisStudy (CHPS).The CHPS study, begun in 1997 and funded by Bayer, hastwo specific study objectives:1) to estimate the incidence of target joint bleeding inpatients with severe hemophilia A treated withescalating dose prophylactic factor replacement;2) to obtain accurate estimates of the direct and indirectcosts associated with this protocol for use in a costeffectivenessmodel by comparing escalating dose withstandard prophylaxis and with intermittent therapy.The study compared three treatment regimens:1. 50 IUs/kg/once a week2. 30 IUs/kg/twice a week3. 25 IUs/kg/three times a weekOutcome measures include the frequency of developmentof target joint bleeding episodes and joint damage asdetermined by the physiotherapy score.Dr. Blanchette’s three main conclusions, supported byprophylaxis studies elsewhere in the world, were:1. Prophylaxis is the standard of care in severe hemophilia A.2. There is a need to individualize children’s therapy.3. It is critical to start prophylaxis early (after no morethan one or two joint bleeds).To read the Dr. Blanchette’s state-of-the-art paper inHaemophilia, see onlinelibrary.wiley.com/doi/10.1111/j.1365-2516.2010.02318.x/full.

30 HEMOPHILIA TODAY m e d i c a l n e w sN O V E M B E R 2 0 1 0MedicalNewsHepatitis & HIVPress ReviewMichel LongCHS National Program Coordinatorand Dr. Elena VlassikhinaVolunteer collaborator Transplant patients could grow their own liversScientists have created liver cells from slivers of skin frompatients with inherited liver disease. Desperately illtransplant patients could be able to “grow their own”livers within just five years, the British researchers said.Scaled up, the technique could be used to generate fullsizedlivers, each a perfect match to the patient thusreducing the risk of rejection.www.dailymail.co.uk/health/article-1306100/Transplantpatients-grow-livers-scientists-turn-skin-organ-cells.html Protease inhibitor TMC435 shows potent andsustained efficacy for genotype 1 chronic hepatitis CMedivir’s hepatitis C virus protease inhibitor TMC435demonstrated potent antiviral activity at the end oftherapy in the Phase 2b PILLAR study and maintainedundetectable HCV viral load through 12 weeks posttreatmentin an interim analysis of sustained virologicalresponse. Potent and consistent antiviral efficacy wasdemonstrated at 24-week end-of-treatment and ininterim SVR4 and SVR12 results. There were no clinicallyrelevant differences between TMC435 treatment groupsand placebo for adverse events.www.hivandhepatitis.com/hep_c/news/2010/0824_2010_a.html Portuguese scientists discover an extraordinary newtype of white blood cellsAfter a transplant and to assure that the new organ is notrejected, patients are put on life-long therapy to suppresstheir immune system which, nevertheless, needs to be leftintact enough to be able to defend the body against allkinds of disease. A tricky balance as the many rejectedorgans attest. But a discovery by a team of Portuguesescientists (Monteiro et al.) could change this, at least forthe liver: they have identified a new type of white bloodcells in cervical lymph nodes, called Foxp3+ invariant NKTcells, which once activated, migrate into the liver andsuppress immune response in its vicinity while the immunesystem elsewhere is left intact. The cells show anunexpected capacity of iNKT cells to acquire regulatoryfunctions that may contribute to the establishment ofimmunological tolerance.nanopatentsandinnovations.blogspot.com/2010/08/portuguese-scientists-discover.html Nevirapine improve hepatitis C treatment outcomesin co-infectedHIV/HCV co-infected people who included nevirapine(Viramune) in their antiretroviral therapy (ART) regimenwere more likely to achieve sustained response tointerferon-based therapy for chronic hepatitis C, accordingto a Spanish study. The researchers suggested nevirapinemay lower HCV viral load and thereby improve treatmentresponse, but an alternative explanation is that people whoare prescribed this drug are less sick at the outset andtherefore more likely to respond to HCV treatment.www.aidsmap.com/page/1493956/ Patients with hemophilia co-infected with HCV/HIVderive liver benefits from HAARTPatients with hemophilia who are co-infected with HCVand HIV have a higher incidence of serious liver problems,but treatment with highly active antiretroviral therapy(HAART) can reduce the risk associated with HCV, accordingto an analysis presented at the Hemophilia World Congress2010.www.docguide.com/news/content.nsf/news/852576140048867C8525775F0074F9CC Chronic hepatitis C linked to increased risk of kidneycancerPeople with chronic HCV infection have double the risk ofdeveloping renal cell carcinoma, or kidney cancer, accordingto a study; researchers recommended that clinicians shouldcarefully monitor and follow up on signs of kidneyproblems in hepatitis C patients, and people newlydiagnosed with kidney cancer should be tested for HCV.www.hivandhepatitis.com/hep_c/news/2010/0706_2010_a.html Blood-boosting adjuvant therapies can improveresponse to Interferon-based treatment forhepatitis CUse of adjuvant medications such as hormones thatstimulate red and white blood cell production allowedchronic hepatitis C patients receiving pegylated interferonplus ribavirin to stay on treatment longer and increasedtheir likelihood of achieving sustained virological response.www.hivandhepatitis.com/hep_c/news/2010/0625_2010_b.html

HEMOPHILIA TODAY y o u t h f i l eN O V E M B E R 2 0 1 0 33(continued from page 32)aspirate or not to aspirate? Ankle arthrodesis or anklereplacement? I was interested to see the variety ofapproaches internationally. Practical sessions providingphysiotherapy management strategies covered topics suchas strength, balance, flexibility, and the use ofelectrotherapeutic modalities. Physiotherapists discussedthe current evidence for best practice, and participated insessions on clinical research design and publication.It was particularly special to see the official recognitiongranted to Canadian physiotherapists at Congress. KarenStrike of the McMaster Hemophilia Treatment Centre inHamilton was recognized as a winner of the BayerCaregiver Award for an exciting project titled AnInteractive Educational…it seemed thata Canadianphysiotherapist inhemophilia care wasfacilitating or presentingin nearly every session Iattended. It was trulyremarkable to see mycolleagues doing whatthey do best: teaching,equipping and learning.Website for Certificationin Home Infusion:Musculoskeletal Module.Nichan Zourikian of theSainte-Justine HospitalHemostasis Centre inMontreal was awarded theprestigious WFH IngaMarie Nilsson Award forhis leadership and initiativein advancing the WFHmission to improvehemophilia care, especiallyin emerging countries.Rows full of proud Canadians were there to cheer for himas he accepted his well-deserved award.Participating in the International Congress of the WorldFederation of Hemophilia was an invaluable opportunitythat I will not soon forget. I came away filled with newquestions, ideas and tools to bring back to our team. I joinphysiotherapists from around the world in thanking myCanadian colleagues for their contribution to thedevelopment of hemophilia care, at Congress and beyond.Nichan Zourikian receiving the WFH Inga Marie Nilsson Award at World Congress.YouthFileRyanne RadfordCo-chair, National Youth CommitteeIwould like to take a minute to introduce myself.My name is Ryanne Radford. I am a severe factor Vhemophiliac and I am the new co-chair of the NationalYouth Committee of the Canadian Hemophilia Society(CHS). I have been involved with the youth committee formore than two years and I am very proud to have thisposition. I am also the vice president of the CalgaryChapter of the CHS as well as a member of the NationalVolunteer Development Committee. I have also set up myown blog to promote awareness about women’s bleedingdisorders and what it is like to live with a chronic illness.My blog, Hemophilia is for Girls, can be found athemophiliaisforgirls.blogspot.com.In my role as co-chair I hope to set a good example toothers on the committee and I hope to show them howfun it can be to be involved with the CHS. We have atotal of nine projects planned for the upcoming year.Each initiative falls under two categories: Awareness, andEducation and Support. One project includes developing ablog that will be linked to the CHS Youth Web page.Another initiative includes getting each member of theyouth committee to organize activities at the chapterlevel specifically for youth. We are also working on aSwim-o-thon program which encourages physical activityand a healthy lifestyle.Our mentorship program is intended to promotecommunication between youth and adult members of theCHS. It is also designed to inspire and encourage youthmembers. These are just a few of the things that arecoming up for the National Youth Committee.

34 HEMOPHILIA TODAY t h e f e m a l e f a c t o rN O V E M B E R 2 0 1 0TheFemaleFactorMe and My Genes – An Interactive video for young carriersThe Canadian Hemophilia Society is pleased to announce that a new resource about being a carrier of hemophiliais now available. Me and My Genes is an interactive animated video that provides pre-teen and teenage carrierswith relevant and age-appropriate information about what it means to be a carrier of hemophilia A or B. TheCHS would like to acknowledge Patricia Stewart, who wrote the script, the actresses, Jenna Degaust and EmmanuelleArpin, who volunteered respectively in the English and French versions of the video, and Tara Curwin, the productioncoordinator of the project. Me and My Genes was made possible through an educational grant from Bayer HealthCare.Me and My Genes is available for viewing on the CHS Web site and copies will be distributed to Canadianhemophilia treatment centres (HTCs) and CHS chapters. It is hoped that Me and My Genes will provide young girls whomay have inherited the factor VIII or IX hemophilia gene with information needed to deal with the impact this disordercan have on a young carrier’s quality of life and health. – C.C.A poster of Me and My Genes was presented during the WFH Congress in Buenos Aires.IssueWhile the severe form of hemophilia A or B affects almost only males, in recent years, problemsexperienced by females who inherit or “carry” the defective gene are being recognized by manyin the hemophilia community. A comprehensive resource, All About Carriers: A Guide forCarriers of Hemophilia A or B, was published by the Canadian Hemophilia Society in May, 2007.Although response to the booklet has been extremely positive, feedback has indicated that asimpler, more age-appropriate resource was needed to respond to the concerns of young girls andteenagers who may have inherited the factor VIII or IX hemophilia gene.MethodologyAn advisory group, composed ofyoung women who are carriers,mothers of carriers and hemophiliahealthcare providers, wasestablished to plan the project. CHSvolunteers, along with staff, wereinvolved with the writing of thescript, the filming and production ofthe interactive video.ContentMe and My Genes provides information, using age-appropriate language and graphics, about hemophilia, inheritance of the hemophilia gene, carrier testing andthe management of bleeding symptoms. The resource also includes interactive buttons for viewers to test their knowledge and access tips, myths and fun facts ofinterest to young carriers. The video is available in English and French.EnglishME AND MY GENESAn interactive video for young carriers of hemophilia A or BFrançais

HEMOPHILIA TODAY o u r s t o r i e sN O V E M B E R 2 0 1 0 35OurStoriesSelf-infusion:A thank youMark and Stefan Lubinski, Toronto, OntarioIhave trouble expressing myselfboth in writing andemotionally, yet now I willattempt to do both. As parents ofa child with hemophilia, weencounter various challenges,stress and disappointments. Whenmy wife told me that our sonStefan asked if he could go awayfor a week with his friend Julianand his family to a cottage lastsummer, I was lost for words.I recalled becoming veryfrustrated the time we tried tosend our son to a week-longspiritual camp, which was an hourfrom our home. We explainedhemophilia, infusions andprophylaxis to the staff, andoffered for my wife to drive thereto infuse our son every secondday. We were told by theadministration that it was toodifficult for the nurse toadministrate the infusions, that itwould be unfair for the otherchildren if my wife came everyother day, and that the childrenwould be doing physical activitiesthat our son could not participatein. My wife and I choose ourbattles carefully because we docome across them from time to time and we realized thiswas probably not the camp for our son.So when my wife approached me, I reminded her ofour past experiences. We wondered if we were ready foranother disappointment and if it was fair to ask theparents of our son’s good friend to take on the extraresponsibility that they were unaware of. Neither ourson’s friend nor his parents knew about Stefan’shemophilia. My wife felt comfortable sharing this medicalcondition with them, I told her to go ahead and speakwith Julian’s mother.… Stefan in the summer of 2009made me the proudest fatherwith his accomplishment.I asked my son to write aboutthese experiences from his ownperspective:My friend Julian askedme to come to his cottagelast summer. I reallywanted to go, but I said,“I’ll think about it”,because of my hemophilia.Having hemophilia meansthat if I don’t get aninfusion every few days andI hurt myself, I could havea very bad bleed. I was only11 years old at the timeand before that my motherhad always given me myinfusions. I thought ifI learned to do it myselfI could go to Julian’scottage. The trip to Julian’scottage was after my twoweeks at Camp Wanakita.Wanakita is a regularsummer camp with a specialbuilding, “The Bayer Den”,where hemophiliacs gettheir injections. My parentsagreed that if I could learnto self-infuse at Wanakita,I could go to Julian`scottage. At Wanakita I tried my hardest to selfinfuseand the nurses guided me through it. Isucceeded! I practiced at home more and moreuntil I was really good at it.The week before Julian’s cottage, I wentcamping with my family and practiced theretoo. We drove to Muskoka to drop me off after ourcamping trip. There my mother and I showedJulian’s mother, Olenka, how the injections aredone. His father, Ivo, watched and seemed(continued on page 36)

36 HEMOPHILIA TODAY o u r s t o r i e sN O V E M B E R 2 0 1 0(continued from page 35)curious. When my parents left I was still a bitnervous but really happy because I was withone of my closest friends for a whole week.I was nervous because of my hemophilia anddoing the infusions by myself. Everything wentfine even though each injection usually tooktwo tries. My friend’s mother helped me byputting the cotton ball on after I pulled outthe needle and she made me feel more securejust by being there.The hardest time to infuse at the cottage wasduring a power outage caused by hard rainsand strong winds. We had to use flashlights.I tried two times and they were both puffybecause the needle was out of the vein. We gaveup because it was the last day, so after that wejust stayed inside and played cards. I felt proudof what I had accomplished. Now I am used togiving myself injections and I do it all the time.I would like to say thank you to: YMCA-Wanakita, thenurses and staff at the camp, the pharmaceutical sponsors,the Just the Guys nurses and regional coordinators, thehemophilia societies, my wife for infusing my son all theseyears, and the biggest, most sincere thank you goes toJulian and his parents Olenka and Ivo, for asking my son tocome with them that summer and for being so supportive.They never hesitated to take Stefan with them when theyfound out about his life-altering medical condition.Thank you Olenka, Ivo and Julian for helping my sonand us to overcome a barrier of past disappointments andfor giving my Stefan what was, I am sure, one of hisgreatest accomplishments. Parents remember and areproud of their children’s first goal, their first home run, afirst place finish… Stefan in the summer of 2009 made methe proudest father with his accomplishment.Thank you, Stefan.Having hemophilia means that if I don’t get an infusion everyfew days and I hurt myself, I could have a very bad bleed.