SUMMER 2007VOLUME 15, NUMBER 2

THE 2007 CHSQ STRATEGIC PLANNING EXERCISE

I had the honour of being invited to astrategic planning meeting with theCHSQ. I'm very glad that I attendedbecause it was an excellent opportunityto discuss and exchange viewpoints andit was personally and collectivelyenriching.We could also have called this day theday of big questions! What are the vision,the mission, and the values of the CHSQ?What are the objectives and how will wereach them? How do you measureoutput, efficiency, impact, and the costof various activities that the CHSQ offers?These questions provoked enjoyable andlively discussions, adroitly led by thefacilitator for the day who was obviouslyan expert in this field. Mr. Bergeron wasable to share his skills on how to achievegood strategic planning and showed usthe rules to follow in order to allow usto work together in an agreeableatmosphere.Thank you to the organizers of this dayfor having shown openness and flexibilityby inviting professionals from thehemophilia treatment centres to take partin this meeting.

Claudine AmesseNurse CoordinatorHemophilia CentreCHU Sainte-Justine

First of all, I'd like to thank you forthe invitation to this strategic planningexercise. I was agreeably surprised thatparents were asked to get involved, sothat they could give their opinion on theobjectives that the CHSQ should targetover the next few years.A study, such as the one requested bythe CHSQ of its organisation, shows thatit's open to self-criticism and thus is ingood health.

On May 12, the CHSQ held astrategic planning day at theEstrimont Suites and Spa in Orford.Mr. Jean-Marie Bergeron facilitatedthe meeting. His experience withcommunity organisations andexpertise with this type of exercisewas put to good use.About fifteen people with aconnection to the world of bleedingdisorders were present, bothmembers of the CHSQ and partners.At the end of the day, a commonvision was put forward: that of aworld without pain and thesuffering caused by hereditarycoagulation disorders.What's more, the mission of theCHSQ was reviewed. From now on,it will read thusly: improve thehealth and quality of life of peopleaffected by a hereditary bleedingdisorder, as well as those peopleaffected by the consequences of acontaminated blood transfusion.Seven objectives were targeted toguide our actions over the next threeyears:1. Assure accessibility to optimaltreatment and care for all peopleaffected by a bleeding disorder.2. Support research.3. Defend the interests of affectedpeople through constant vigilance.4. Assure the support and educationof members and health careprofessionals, as well as make thegeneral public aware of our cause.5. Collaborate with the CanadianHemophilia Society.6. Develop partnerships with the

international hemophilia communityin order to share our expertise,improve health care in thesecountries and learn from theirexperiences.7. Collaborate with otherorganisations devoted to rare blooddisorders.Here are a few comments from someof the participants:

***On behalf of the Canadian HemophiliaSociety I'd like to thank the CHSQ forhaving invited two representatives of theNational office to take part in its strategicplanning process. This exercise hasallowed us to better understand theneeds of the Quebec Chapter and willpermit us, in turn, to adjust our ownaction plan in order to better respond tothe needs of our clientele.During the national strategic planningexercise, we decided to work together,as one organisation at all levels (national,provincial and regional) in order to reachour common objectives. This sessionhas shown us that we can achieve this.We've defined a common vision andobjectives that are complementary.I'd like to congratulate the QuebecChapter for having initiated this step andwould like to invite all members of theCHSQ to take part in the next phase ofthe process. The Canadian HemophiliaSociety is your organisation and it's yourduty to take part in identifying priorities.We need you in order to remain a strongorganisation that serves its members.It's important to remember that none ofthe programs and services offered by theorganisation could exist without theimplication of volunteers.

Hélène BourgaizeDirector of Volunteer ServicesCanadian Hemophilia Society

Seven Objectives to Guide our Actions

cont’d on page 12 >

2

A WORD FROM THE EDITOR

In order to clarify our visionand our mission, not to mentionto better orient the presenttendency to favour direct servicesto members instead of researchand advocacy issues, the CHSQundertook a strategic planningexercise.

An important step in this exercisewas the planning day that tookplace on May 12 (see text on page1 and 12), but a large part of thework was done beforehand and infact, the actual implementation ofthis strategic plan begins now.

With the help of a consultant whowas hired to lead us through theprocess, Mr. Jean-Marie Bergeron,we established an organisationaldiagnosis of the CHSQ. Thisincluded our strengths, points toimprove and present constraintsthat we have to face.

Amongst our principle strengthswas our structure based on theaccountability of those elected, thehigh level of participation of thesepeople, good strategic leadership,devoted and competent employeesand good financial management.

The main points to improve wereon the level of defining roles andresponsibilities of different players,the creation of measures forencouraging personnel andvolunteers, as well as the pertinenceand evaluation of our programs.

As for the constraints, the difficultyin finding new volunteers and a lackof interest by members were noted.

Putting our strategic plan into actioninvolves carrying out our missionaccording to the seven measureswe decided on (see text on page 1)related to the means, schedules andprecise performance indicators that,for the most part, are alreadyestablished. This way, we'll be ableto measure to what extent we'llhave attained our objectives.

A large part of the work is done,but we'll need the involvement ofour key volunteers and then of ourmembers. This way we'll all be ableto count on an even more solidorganisation that will better meetthe needs of its clientele, and whichwill be able to work in a concertedand efficient way faced with anyeventuality.

In order to learn more about thestrategic development plan of theCHSQ and/or to obtain a copy, youcan communicate with our officeat the usual addresses. (Seebelow). §

SUMMARY

EDITORIALSTAFFEditor:François LarocheContributors:Geneviève BeauregardSuzanne ChampouxMarius FolteaNathalie GagnonLouisette B. L’HéraultRicardo LamourAline OstrowskiDavid PouliotChantal RoyCatherine SabourinPatricia StewartProofreaders:Geneviève BeauregardAline OstrowskiPatricia StewartPage layout:François LarocheTranslation:Patricia Stewart

larochef@sympatico.ca

The 2007 CHSQ StrategicPlanning Exercise 1 & 12Seven Objectives to Guideour Actions

A Word from the Editor 2

Editorial 3The Importance of Partnerships

Reader’s Opinion 3

Rendez-vous Québec 4The CHS Medical Symposium andConsumer Workshops

In a Word 4

Parents’ Corner 5Glanzmann Thrombasthenia:Another Bleeding Disorder

CHSQ Activities 6

Youth Corner 7How Youth GroupsAround the World Work

Fundraising 8

Focus on Hepatitis C 9Proper Treatment ComplianceHelps the Healing Process

Nurses’ Corner 10Be Prepared!

Various Héma-QuébecCommittees 11

Elsewhere in Canada 12

byFrançois Laroche

• L'Écho du facteur is a quarterly newsletterproduced by the Quebec Chapter of theCanadian Hemophilia Society and isdistributed to its members.

Circulation : 250 in French, 100 in English

Legal deposit : Bibliothèque nationale duQuébec, 2007.

The opinions expressed in the various columns are those of the authors and do notnecessarily represent the viewpoint of the CHSQ.To let us know your comments or to give your opinion on any related topics,send your text to the following address:L'Écho du facteur, CHSQ, 10138, Lajeunesse, Suite 401,Montreal (Quebec) H3L 2E2Telephone: 514-848-0666  or 1-877-870-0666Fax: 514-904-2253or by e-mail to the followingaddress: info@schq.orgWebsite: www.hemophilia.ca/en/8.5.php

3

EDITORIAL

Héma-Québec is another importantpartner for CHSQ.Two members are nominated by ourorganisation to sit on the Héma-QuébecRecipient Representatives' ConsultationCommittee.On page 11, you can get more detailsabout the various Héma-Québeccommittees on which we have activerepresentatives. As well, in terms offundraising, Héma-Québec has beenopen to our solicitation and contributesto our cause twice a year. Each year weare invited to take part in regional daysthat they organise, always an informativeexperience.The national level of our organisation,the Canadian Hemophilia Society (CHS)is one of our essential partners.Representing the rights and interests ofpeople living with a bleeding disorderacross Canada, the CHS develops,amongst other things, educational,research, fundraising and supportprograms for members of the provincialchapters. What's more, they support thechapters financially in a very significantmanner. Our missions are similar andwe share the same vision. Leafingthrough Hemophilia Today, you can geta good idea of all the work the CHSundertakes for the benefit of ourcommunity.The Quebec Ministry of Health and SocialServices is also an important partner. Infact, besides having supplied funding formany years, we are also privileged tohave a representative from ourorganisation sit on the HemovigilenceCommittee. Its mandate is to advise theMinister of Health and Social Serviceson the risks related to blood transfusions,infections transmitted by blood and anynew and pertinent information on bloodproducts.

The strategic planning exercisethat began a few months ago remindsus of the importance of maintainingand developing productivecollaborative contacts with ourpartners. Their viewpoint bringselements essential for the evaluationof our organisation and allows us toreflect in a broader context and openour community to the outside. Thesepartners play an important role on adaily basis in the workings of the CHSQand constitute part of our identity.Amongst the important CHSQ partnersstand the health care professionalswho work in the Hemophilia TreatmentCentres (HTC). These people areinvolved at a number of levels on apermanent basis. As members, youget to meet some of them duringactivities organised for you, such asthe family weekend or summer camp,and you can read articles written bythem in the newsletter. A number ofthem are also involved in task forcesin our organisation, notablyinternational projects. Throughout theyear, we work together with personnelfrom the HTCs, who refer new familiesto us, answer our various questions,consult us when necessary and workwith us on specific files and alsoparticipate in our fundraising activities.What's more, the CHSQ is invited totake part in the annual meeting of theHTCs and present a report.

Companies that faithfully support ouractivities, which are primarily from thepharmaceutical industry, are alsostimulating partners for ourorganisation. The interest they bring tothe development of our servicesmotivates us to act for the well-beingof our community and our relationshipallows us to obtain pertinentinformation for our members, whilealso informing people within thesecompanies about the daily reality ofour members' lives.The CHSQ, along with 15 otherorganisations that are active in thehealth network, are part of QuebecHealth Partners whose mission, throughits campaigns in the work place, is toimprove the health and quality of lifeof its citizens by offering support andservices to people affected by one ormore health problems related to theQuebec Health Partners organisation.Our organisation's involvement at theheart of this group, apart fromgenerating profits, is an excellent sourceof information, exchange, andstimulation, and also encourages us towork with others.In conclusion, all the individuals andorganisations, companies orfoundations that work from near or farin collaboration with the CHSQ are, infact, important partners and contributeto keeping our organisation in goodhealth, helping its members to benefitfrom this state as much and as oftenas possible. §

“The only way to offer someone hope fora better future for all humanity is throughcooperation and partnership.”

Kofi Annan

READER’S OPINION

Congratulations to the team atL'Écho du facteur… I always lookforward to reading it with interest.In the last edition, I really appreciatedthe article on desmopressin thatappeared in the Nurse's Corner.Thanks to Mrs. Ginette Lupien for allthe information about DDAVP.

I'm one of those who occasionallytake desmopressin and this is thefirst time that it's been explained soclearly and precisely.Thanks to the whole team and Mrs.Lupien in particular. §

Louisette B. L’HéraultCharny

aostrowski@schq.org

byAline Ostrowski

THE IMPORTANCE OF PARTNERSHIPS

4

RENDEZ-VOUS QUÉBEC

RENDEZ-VOUS QUEBEC, theCanadian Hemophilia Society'smedical symposium, took place May25-27 at the Delta Hotel on René-Lévesque Boulevard in Quebec City.Thanks to the CHS, I was able toattend, and I'd like to give you myimpressions of this activity, whichI found very informative.The medical symposium dealingwith standards of treatment forhemophilia as well as othercoagulation disorders was agoldmine of information explainingthe importance of having treatmentstandards for hemophilia treatmentcentres. It was reassuring to see allthese people (including a numberof specialists in hemostasis) workingtogether so that our hemophiliacscan have the best care andtreatment possible.

Amongst other workshopsorganised during the weekend, Ihad the chance to take part in onedestined for hemophilia carriersfacilitated by Patricia Stewart. Thisworkshop was particularlyinteresting since it dealt with theproblems that hemophilia carriersoften deal with. The different peoplewho were there to explain carriers'problems were captivating and weleft with a feeling of finally under-standing some of our symptomsthat had been ignored before.After the workshop, we were ableto get a copy of the new tool forcarriers: All About Carriers. This bookwill be of great help for women whohave just learned that they arecarriers of hemophilia since it coversmany topics on both the physicaland psychological levels.The last workshop I attendedwas a hands-on workshop forfundraising. Those of you who knowme know that I enjoy fundraising.This workshop was a goldmine ofinformation with tips on how tomake our next fundraising efforts a

resounding success by using toolsthat the CHS has to offer, such asthe 'toolbox for fundraising” kit. Thenew National fundraising initiativeswere explained, including thecolouring book campaign as well asthe Dare to Dream for Hemophiliaprogram (I suggest you visit the CHSwebsite www.hemophilia.ca to findout more about this innovativeprogram).And finally, I mustn't forget thebanquet Saturday evening. Everyonewas there to talk and celebratetogether. There was a very emotionalmoment during the evening whenthe new DVD documentary abouthemophilia was shown. The variousstories that were presented werevery touching and I must admit, Ished a few tears (and I know fromgood sources that I wasn't the onlyone).I'd like to take this occasion to thankthe CHS for having allowed me toattend this enriching weekend. I'llalways remember the information Ilearned and the people I met. Thankyou very much! §

CHS Medical Symposium and Consumer Workshops

byLisa-Marie Mathieu

IN A WORDGinette Lupien retiresThe nurse coordinator at theHemophilia Centre for EasternQuebec at the Hôpital de l'Enfant-Jésus, Ginette Lupien, recentlyannounced her retirement. She planson leaving her position on July 20.Considered as their second motherby many hemophiliacs in the QuebecCity area (by the younger ones atleast!), Ginette will be hanging upher tourniquet after twelve years ofservice at the hemophilia centre andmany other years at l'Hôpital duSaint-Sacrement, where the centrewas previously located.Ginette collaborated on a number ofCHSQ activities including summercamp, the family weekend and shealso sat on the Comprehensive CareCommittee for a number of years.A few of her patients organised afarewell supper for her on May 31.She was given a bouquet of flowerson behalf of the CHSQ and herpatients to show their appreciation.

The CHSQ wishes Ginette Lupien ahappy retirement with good healthand good times.

Claude Meilleur, new nursecoordinator at the InhibitorsCentreThe Quebec Reference Centre forPeople with Inhibitors to Coagulationat CHU Sainte-Justine now has a newnurse-coordinator.Her name is Claude Meilleur, andshe's taking over from Sylvie Lacroixwho retired last autumn.

Claude is well known to hemophiliacsin the Montreal area since she waspart of the Hemophilia TreatmentCentre team at CHU Sainte-Justine.The CHSQ wants to wish ClaudeMeilleur the best of luck in her newposition.

New CHSQ BoardDuring the Annual General Meetingthat was held during the 2007 familyweekend, members of the CHSQ wereelected to the new Board of Directorsfor the present year. (See photo). § 

2007-2008 Board of Directors.Seated : Nayla-Marie Syriani,

Martin Kulczyk (2nd Vice-president) and Roxanne Nadeau.

Standing : Luc Topping, DavidPouliot (Secretary), Marius Foltea,Mylene D’Fana (1st  Vice-president

et Past-president),François Laroche (President),

Aline Ostrowski (ExecutiveDirector), Pascal Mireault and

Denis Durocher (Treasurer).

5

PARENTS’ CORNERGlanzmann Thrombasthenia: Another Bleeding Disorder

left with a variety of differenttreatments and medications toadminister at various intervals. I feltoverwhelmed. I even had to makea list to make sure I didn't forgetanything! Today, most of thesetreatments are part of our dailyroutine.Since we're a fairly active family andlike outdoor sports and travel, we'vechosen not to limit our girls'activities too much. Coralie hasknown for a long time that she hasto be more careful than otherchildren, that she can participate inmost activities, but must be prudentand not push the limits. It's notalways easy for her, but she's usuallypretty reasonable.Coralie goes swimming, does ballet,snowshoeing, skating and hiking.She even goes alpine skiing, a sportthat's quickly become one of herpassions! Her little sister can't waitto go too! We've also gone on twoplane trips where everything wentwell, one to Disney World in 2006and another recently to Cuba.Finally, I want to say that we reallyenjoyed taking part in our first familyweekend and especially the warmand friendly atmosphere we foundthere. We met parents—and evengrandparents—totally dedicated tothe well-being of their children. Thisexperience was very enriching foreach of us. We're overjoyed to havefound the CHSQ, something I'ddescribe as a big, friendly family. I'dalso like to mention the remarkablework of Geneviève Beauregard, whooffers exceptionally personal serviceand, most of all, a well-appreciatedwarm presence.Looking forward to seeing you! §

Nathalie GagnonBromont

Hello everyone,I hope you'll all have a great summer.As usual, we're always on thelookout for new stories, topics oranecdotes for L’Écho du facteur, sodon't hesitate to contact us if you'vegot any ideas or suggestions.You may remember that a while agoI told you about the Step-by-Stepsite on the Canadian HemophiliaSociety Web site. Don't forget thatthis site includes a forum where youcan contact other parents with boysor girls who have a bleeding disorder.For more details, check out the siteat www.hemophilia.ca.I'd also like to tell you about themother of a hemophiliac in theQuebec City area who's very talentedwhen it comes to fundraising andwho has agreed to take over theParent's Corner column for L’Échodu facteur.Ah, yes! I'm taking a little break butI'll be leaving you in good handswith Lisa-Marie Mathieu. Don'thesitate to get in touch with her ifyou have any ideas for the Parents'Corner. Here is her e-mail:yanliz@ccapcable.com.I mentioned a new family in the lastedition who joined us for the firsttime during the recent familyweekend in Matawinie. NathalieGagnon agreed to talk to us abouther two beautiful little girls and theirbleeding disorder. Here's theirstory!!!

GlanzmannThrombasthenia

I’m the happy mother of two littletreasures, Coralie (5 years old) andÈve-Marie (2 years old). We've onlybeen members of the CHSQ for oneyear. During the annual meeting atMatawinie last March, I got to meeta lot of inspiring people, ChantalRoy among them, who asked me to

tell you about our family'sexperience.In fact, we're one of the rare familiesthat have to deal with a bleedingproblem on a daily basis with girls!Our two girls have a very rarecoagulation problem calledGlanzmann Thrombasthenia. Thisis a platelet disorder where there isan absence of platelet aggregationin the coagulation process.In fact, the hematological disorderthat affects our family is fairly rare,just like the research about it,unfortunately. The most commonsymptoms of Thrombasthenia arebruising, and epistaxis as well asbleeding gums, heavy bleeding afterany kind of injury and even internalhemorrhages, such as weexperienced just over a year agowith our oldest, Coralie.The initial symptoms of the disorderoccurred when Coralie was born.Her head was covered with tiny redlesions on her skin and she had ahemorrhage after a vitamin Kinjection (this injection is routineand is given to stimulate coagulationin newborns).So a battery of tests began in thehours following her birth, andcontinued with a series of medicalvisits and blood tests as soon as weleft the hospital. Since no doctorwas able to identify the problemthat was causing her many bruises,Coralie was finally refered to theHematology Department at Ste-Justine's Hospital when she was 8months old. From that point on, tenlong months went by before we gota precise diagnosis that could onlybe arrived at through a process ofelimination.When Ève-Marie was born, it wasclear that she had also inheritedthrombasthenia. Confirmation ofthe diagnosis was fairly quick in hercase.Over the next few months, welearned to live with the little dailyproblems, the heightenedsurveillance and the limitsassociated with a coagulationdisorder.I remember the first time Coraliewas hospitalized, when she was 13months old, for severe epistaxis. We

lescanonniers@sympatico.ca

byChantal Roy

6

CHSQ ACTIVITIES

Just the Gals WeekendA few days before our activity, welearned that the Estrimont Suites& Spa had been ravaged by a firethat completely destroyed the mainbuilding, so we had to find anotherlocation for the activity. Thus theJust the Gals Weekend took placeat another enchanting well-knownsite called Le Manoir des Sables.Our 15 mothers got a chance toshare some great moments: arelaxation workshop, good food,time to relax, and just plain fun!What more could you ask for?In looking at the evaluations thatwere completed to know theparticipants' level of satisfaction,it's obvious that the weekend wasappreciated by all.We'd like to thank Nayla-MarieSyriani who helped put this activitytogether, with the help of MyleneD'Fana.

Youth camping activityThis camping activity had to becancelled due to a lack of sufficientregistrations. However, the YouthGroup is presently working onorganising a new activity that willtake place during the summer.Young people will be contacted inJuly and there'll be moreinformation given at that point.Summer campOnce again, the counsellors at thePorneuf summer camp arepreparing a great and variedprogram that everyone will enjoy.There are 29 campers, including14 hemophiliacs, who'll get thechance to attend this year andthose with a bleeding disorder willbe supervised by two nurses,Ginette Lupien and ClaudineAmesse, who have agreed to workwith the CHSQ once again this year.We'd like to thank them for havingaccepted our request and for havingovercome a number of problemsto do this. This camp will certainlybe a success once again!Amongst the young peopleregistered is a youngster from theOntario Chapter of the CanadianHemophilia Society who'll be takingpart in camp as part of our summerexchange program. We'll bewelcoming him and wish him anunforgettable stay.

What's more, one of our youngsterswill be attending the NewBrunswick chapter's camp. He'll begoing to this chapter's summercamp, which will take place fromAugust 25 to 31 at the ScotianGlenn Salvation Army Campgroundin Nova Scotia. We wish him Bonvoyage; it will undoubtedly be anincredible experience!

Family weekend for familieswith inhibitorsThe task force held its first meetingto begin planning for this activitythat will take place during themonth of October. The weekend isvery promising!You'll find more information aboutit in the next issue of L’Écho dufacteur.Student Scholarship ProgramOur annual student scholarshipprogram, held in collaboration withBayer, Baxter, CSL Behring, NovoNordisk and Wyeth, offers theopportunity for students at thecollegial, university or professionaltraining levels or for peoplereturning to school to receivefinancial support for their academicendeavours.The deadline for submissions isSeptember 15, 2007.Candidates who are interested areasked to communicate with ouroffices so that we can send themthe admission criteria as well anapplication form, by telephone:(514) 848-0666 or toll free:1-877-870-0666, or by e-mail :info@schq.org.Scholarships will be awarded tosuccessful candidates during themonth of October 2007. §

S C H Q

The 15 participants in the Justthe Gals weekend seemed toappreciate their stay at themagnificent Manoir des Sablesin the Eastern Townships.

gbeauregard@schq.org

byGenevièveBeauregardAdministrativeServices andProgramCoordinator

7

byDavid Pouliot

david.pouliot@gmail.com

YOUTH CORNER

boy friends are also invited to takepart if they are old enough.

HollandFor the past few years, the Dutchassociation has organised a sailingweekend for youth between the agesof 18 and 30. Participants have ameeting on the Friday.During the day on Saturday, peopleare on the boats and after suppersomeone is invited to lead adiscussion on a specific topic (sports,hepatitis, travel, etc.) in relation tohemophilia. Towards the end of theevening, people can get off the boat,visit a small town where they'remoored and even have a drink.On Sunday, the men and women aredivided into two discussion groups.During the afternoon on the finalday, everyone returns to his or herpoint of departure.

PeruLike Quebec, the association has hada youth group for the past three years.However, the group has a problemwith participation; there are onlyabout 5 people who come to themeetings. They're working toimprove the situation.

GermanyTheir organisation has had a youthgroup for 2 years. As with the youthgroup in Canada, members of theGerman youth group sit asrepresentatives of their own region.This national committee plansmeetings for youth all over thecountry.At these meetings, the first half ofthe meeting is very educational andthe second is recreational.Sometimes this can simply be to visitthe city where the youth are meeting.And of course they always take theevening to relax.

That's it for this little trip around theworld. §

This column is often used topromote and report on the YouthCommittee's recent news andactivities.We'll do the same again this time,but the news will be about whatyouth from around the world aredoing. Of course, we can'tparticipate, but it's always inspiringand educational to know what'shappening elsewhere.To be honest, all the informationyou'll find here comes frompresentations made by users of thewww.los-bleedos.net website,whose official launch was heldduring the last world congress. It'sdestined for anyone affected by ahereditary bleeding disorder. So Ijust trusted the authenticity of theinformation as listed. I'd inviteanyone who's done more researchto let me know if there are anymistakes or if anything's missingfrom this article.Here are a few highlights that Iremember for the following ninecountries.

DenmarkThe Danish association has asurprising group of over 50 youth(15 to 30 years of age) who meet ona regular basis. They're most popularactivity is a musical outing. Oddly,the ski trip that the youth committeeorganised this year was cancelleddue to a lack of registrations. Theircommittee still works in an ad hoc

way for the moment, but theassociation wants to create a moreformal and structured system, suchas we have in Quebec and Canada.

NepalThe Nepalese association has anactive youth group made up of verydevoted young people. Membersmeet religiously every secondSunday of the month. Thesemeetings allow them to share theirfeelings and opinions on all types ofsubjects.When I was gathering thisinformation, the members of thecommittee were in the process oforganising a day camp for youth thatwill take place this summer.SwedenSweden has a youth group. As far Ias know, they organise a ski tripevery year.

United KingdomThe organisation has a monthlynewsletter specifically aimed atyouth. It's a very professionalpublication, and even has a littlecartoon inside. The theme of theissue I saw on the web dealt withsoccer.

AustraliaTheir youth group is responsible forwriting an information bulletin everytwo months aimed at youth. Theyalso organise a leadershipdevelopment program, and haveorganised their second one. A smallyouth contingency from NewZealand was invited to take part intheir workshops.

MalaysiaThe Malaysian association organisestwo summer camps: one junior andone senior. The senior camp is foryouth who are older and who areinterested in discussions about youthin general and the development ofthe organisation. Note that the familyof the young people and their girl or

How Youth Groups around the World Work

A MOMENT TO REFLECT

“An intellectual is someone who doesn't have enough words to explainwhat he doesn't know.”

Dwight Eisenhower

8

byRicardo Lamour

FUNDRAISING

Hello everyone,I'm pleased to be able to tell youwhat a great privilege it is for me towork for a cause related to life. I'vebeen at the job for almost threemonths now, doing fundraising, andlet me tell you that each of the jobsI undertake brings me expertise thatallows me to grow as a young adultwhile letting me be in contact withthe CHSQ’s reason for being, you.So I've got big shoes to fill with thosewho came before me in one way oranother, in the context of fundraising(Aline Ostrowski, Serge Séguin,Mylene D'Fana and others) to meetthe needs of the CHSQ in bothquantity and quality! Ouf!!!

The CHSQ Bowl-a-thon, aSure StrikeWe're very proud and encouraged bythe success of the third edition of theCHSQ Bowl-a-thon that took placelast May 5 at the Quillorama BillardL'exclusif in Val Bélair and on May6 at Champion Lanes in GreenfieldPark.This third edition of the CHSQ Bowl-a-thon was a success in both Quebecand Montreal. A self-financingsuccess that generated net revenuesof $ 7000 (Quebec and Montrealcombined). It was also a success interms of support by our members,their families and their friends.

A success to be shared

We'd like to thank everyone whomade the Quebec Bowl-a-thon asuccess through their presence andtheir participation, and in particular,Chantal Roy and Lisa-Marie Mathieuwho, despite some unexpected last-minute problems, managed tomobilize the troops for the gathering.In fact, an agreement had to beconcluded with the QuilloramaBillard L'Exculsif in Val Bélair, sincethe Salle de quilles Saint-Pascal, withwhom we've dealt for the past twoyears, couldn't offer us winningconditions for the third edition of theQuebec Bowl-a-thon.So the bowling alley in Val Belairwelcomed almost 80 players spreadout over 14 lanes. The Quebecversion of this third Bowl-a-thonraised the net sum of $ 3300,including $ 2100 in donations.In Montreal, we'd like to thankeveryone who contributed by buyingtickets and by volunteering toorganize the activity. We'd especiallylike to thank the following people forthe large number of tickets they sold:Nayla-Marie Syriani, David Pouliotand Nathalie Martel.There were 179 players spread over29 lanes at the Champion Lanes. TheMontreal Bowl-a-thon raised $ 3860in profits, which is $ 110 more thanthe first edition, and $ 900 more thanlast year.The bowling alley was extremelygenerous by allowing us to pay onlyfor the alleys that were used and notaccording to the number of ticketssold, which worked in our favoursince we used 29 alleys.We must not forget to mention thegreat job Razek Syriani did. Hecollected $ 285 for the CHSQ through

the sale of half-and-half tickets. Anadditional donation of $ 100 wasgenerously offered by the happywinner of the half-and-half draw.Successful sponsorshipOur sponsors mustn't be forgotten,since they're part of this success.That's why we'd like to mention thecontribution of our partners, Bayer,Baxter, Héma-Québec and NovoNordisk.What's more, players in both QuebecCity and Montreal were spoiled withthe number and quality of door prizesthat were drawn. These prizesincluded tickets for a museum, thecinema, the biosphere and the theatreas well as coupons for bookstores,gifts and a large number of compactdiscs.Thank you all for your involvementin the success of this 2007 edition ofthe Bowl-a-thon!

A Fourth Edition of theBowl-a-thon in 2008Spurred on by the success of this thirdedition of the CHSQ Bowl-a-thon, it'sclear that we'll continue next year byholding the fourth edition of this self-financing event, which is one of ourannual fundraising activities. Andwe'll make sure to keep the familyaspect that is so appreciated byparticipants.

An event to followThe fourth edition of the CHSQ Bowl-a-thon will be announced in the 2007winter edition of L'Écho du facteur.We'll tell you the best way to get yourtickets while giving you documentsabout fundraising related to thisactivity.We all look forward to taking part inthis annual event! §

rlamour@schq.org

The lanesat theQuilloramaBillardL’Exclusifde ValBélairthunderedunder thethrows byQuebec Cityareamembers.

Participantsfrom the

Montreal areagot to meet

RicardoLamour,our new

fundraisingagent, who

greeted themat Champion

Lanes inGreenfield

Park.

9

FOCUS ON HEPATITIS C

miniscule quantity of viral particlesin your blood.

Is it safe to take Tylenol(acetaminophen) if I havehepatitis C?

Acetaminophen, the activeingredient in Tylenol, can damagethe liver if it is taken in largequantities.Carriers of the hepatitis C virusshould limit the quantity ofacetaminophen to a maximum of2 grams per day, i.e. 4 X 500 mgor 6 X 325 mg tablets.

Can the mix of interferon andribavarin have an effect onweight?

It's true that this mixed treatmentcan affect weight. This is usuallya loss of weight and occurs inabout one out of ten subjects. Theprinciple offender is interferon,because it diminishes appetitewith accompanying nausea orabdominal cramps.One can gain weight if the persontends to eat more to lessen thenausea or dry mouth that issometimes experienced withinterferon. But any change in bodyweight during treatment, whethera loss or gain, will return to normalonce the medication is stopped. §

Complying with treatmentcan be defined as theconsistency with which a personfollows treatment that's beenprescribed.For example, a doctor asks you totake an antibiotic three times aday for ten days. This is what youdo for the first three days, but assoon as the symptoms of yourinfection diminish, you decide toskip doses. On the seventh day,you feel fine, so you stop yourtreatment even though the doctorand the pharmacist told you tocontinue it for ten days. This is anexample of poor compliance totreatment.A study1 done in the field ofcardiology showed that peoplewho faithfully follow the treatmentthey've been prescribed lowertheir risk of death. This may seemto be logical: medication is givento improve his health, the patienttakes the medication regularly, hishealth improves and he liveslonger.But this study is surprising becauseit showed that even patients whowere regularly given a placeboalso saw their longevity improvecompared to those who were lessfaithful to their treatment!In this study, medication to helppeople suffering from congestiveheart failure, candesartan, werecompared to a placebo (a pillsimilar to candesartan but whichdoesn't contain the activeingredient). This was a double-blind study, meaning that neitherthe doctor nor the subject knewif the pill was candesartan or theplacebo.

The study showed thatcandesartan worked better thanthe placebo to improve survivalrates for people with congestiveheart failure. A secondary studyperfected this data by showingthat compliance to treatment,even a placebo, can in itself leadto a better rate of survival.Those who followed theirtreatment to the letter were oftenmen, while smokers, andespecially women who smoked,were less likely to respect therequired dose.The authors of the study believethat compliance is an indicationthat, in general, differenciatespeople who are less non-conformist and who, therefore,tend to listen to their doctor'sadvice and put it into practice!Other studies undertaken also incardiology, but for otherpathologies, have shown thebeneficial effects of treatmentcompliance. Unfortunately, thereare no similar data in the field ofhepatitis C, a pathology thatnecessitates a treatment that islong and difficult to undergo.But if this hypothesis of 'goodcompliance' is relevant, one couldpresume that respecting thedoctor's advice may have apositive overall effect withtreatment for hepatitis C.1- The Lancet, vol. 366, December 10,2005 : www.thelancet.com.

*****

A FEW QUESTIONS AND AFEW ANSWERS(inspired by the Hepatitis CResource Centers Web Siteswww.hepatitis.va.gov/vahep?page=pt-home)

Hepatitis C treatment haseliminated the virus from mybody. Can I give blood or thinkabout organ donation?

No. Though the successfulhepatitis C treatment shows thatthe virus can no longer damageyour liver, there may still be a

Proper Treatment Compliance Helps the Healing Process

The Focus on Hepatitis C

column has been made possible

thanks to the financial

contribution of

Schering Canada.

bySuzanne ChampouxSpecial Contribution

10

Be Prepared!NURSES’ CORNER

Today's hemophiliacs are active!Thanks to the availability andsafety of factor concentrates,nothing stops them from takingpart in their favourite activities...except maybe injuries and bleeds.Are you ready to take care ofthem? I'd advise you to recheckthe contents of your first aid kitbecause after all, summer's madefor playing!

Basic ItemsFirst of all, I suggest you get a kitthat's filled with first aid items,which you can find in a pharmacyor in a store. They contain all kindsof bandages, sterile gauze, tape,scissors, etc.In order to clean surface cuts, it'srecommended that they be rinsedunder running water and cleanedwith a mild soap. Apply antibioticointment and they'll heal well.There's no need for disinfectantsthat burn like peroxide or rubbingalcohol. After all, they sting!Dirty cuts benefit from beingsoaked 4 to 5 times a day inlukewarm water with a few dropsof bleach.Deep cuts and/or large scrapesshould be rinsed with a sterilesolution (also available at the drugstore) and should be seen by adoctor.

Where to keep the first-aid kit?Personally, I keep my kit in my car.This way, it follows me everywhereI go and is there when I need it. Butbe careful! Never leave yourconcentrates in the car even ifthey're in a cooler bag. The extremetemperatures they could undergowould make the factor unable to beused for consumption andpotentially dangerous.

First aid classes and CPRWhy take first aid classes? For thelove of your family and those aroundyou.The Canadian Red Cross(www.redcross.ca) and St-John'sAmbulance (www.sja.ca) offercomprehensive, high quality classesgiven by qualified instructors andthis, for reasonable prices. Askabout them. They also offer trainingfor teens.After these classes, you may wantto add other items to your kit,including a mask to do CPR (cardio-pulmonary resuscitation) and anoral airway device or Guedal patternairway.

I hope I managed to teach you aboutthe need to have a well-stocked firstaid kit, ready for any eventuality.But nothing can replace careful andsafe actions.The best way to avoid injury andmany bleeds is to use the best toolyou have, the one between yourtwo ears! And with that, I wish youa pleasant summer! §

Triangular bandages are used toimmobilize an injured arm and tomake a sling. They can be boughtat stores, but I suggest you makethem from sheets. They'll be moreresistant.Finally, all kits should have elasticbandages and an instant cold packto reduce inflammation and relievethe pain from bleeds, sprains andbruising.

Additional itemsOther items can be added to yourfirst aid kit depending on theactivities that you practice. Forexample, a person who goes onlong hikes in the woods wouldwant to include the following items:matches, a thermal cover, snacksrich in calories, distress flares, map,compass, GPS, cell phone…

SplintsTo immobilise an injuredappendage, it's easy to make a'home-made' splint. You can usePopsicle sticks for fingers. Forwrists, you roll up a few magazinesand tie them with sticky tape. Youcan do the same thing for arms andlegs, but with cardboard.Ski or hiking poles can immobilizea leg. All you need to do is attachthem with a triangular bandagefolded into a band. In short, useyour imagination! However thereis a very useful product called SamSplint. It moulds to the shape ofthe body and is reusable. (Photo)

Essentials for hemophiliacsMany hemophiliacs infuse factorconcentrate before taking part inany physical activity. While thismay help to avoid a lot of bleeds,an injury can still occur during theactivity.Prophylaxis may not be enough tostop the hemorrhage. So it wouldbe wise to carry your factor withyou. Prepare a 100% dose, theinfusion materials and a cleansurface (ex. a towel or cloth). Keepit in a cooler bag if your concentratehas to be kept cold. And you mightas well add a few cyklokapron pillswhile you're at it. They could beuseful if a mucus bleed occurs.

by Catherine SabourinHemophilia Nurse at theMontreal Children’s Hospital

Sam Splint moulds to the shape of the body andis reusable.

11

Since I joined the Héma-QuébecLiaison Committee, I've beennominated as a representative onthe Safety Committee and theMedical and Scientific Committee. Icount myself lucky to be exposed toso many different problems relatedto blood products.The last meetings of bothcommittees were heldsimultaneously in Toronto on March28, 2007. I only attended the SafetyCommittee meeting, because it wasmy first experience with this group.The Safety Committee is composedof specialists from various fields -such as infectious disease,epidemiology, public health,transfusion medicine —as well asconsumer representatives. ThisCommittee is responsible foradvising the Héma-Québec Board ofDirectors on matters pertaining tothe safety of blood and bloodproducts, especially concerningexisting or emerging bloodpathogens. It also has to assist theBoard in the process of evaluatingrisks. There are members of thisCommittee from abroad, includingBrazil, France the United Kingdom,the Netherlands and the UnitedStates.The main topics we discussed were:• Transfusion Related Acute LungInjury (TRALI), which consists of arare complication that can be fatalfollowing the transfusion of bloodcomponents containing plasma, inparticular red blood cells, platelets,granulocytes and cryoprecipitate.TRALI usually occurs 1 or 2 hoursfollowing the start of the transfusionand is characterized by acuterespiratory distress.The symptoms from TRALI provokea number of health problems, suchas pulmonary oedema. A number ofmeasures were presented to lessenthe incidence of TRALI and wereapproved by the Committee.

• The test to detect Chagas, whichcauses different heart problems,lesions to the digestive tube orneurological problems, is now

licensed in the U.S. Héma-Québec isin the process of evaluating andcollecting data to better understandthis disease before carrying outscreening tests as other blood banksdo.

• There have been two cases of vCJDin people who have lived or who livein Saudi Arabia. It's known that vCJDis a variation of Creutzfeldt-JakobDisease, which causes aneurodegerative state in humans.According to various data, the mostprobable cause for the contaminationof individuals is the consumption ofimported British beef. Thus, theCommittee voted to add a questionto the form completed by blooddonors to find out whether they livedfor more than 6 months in SaudiArabia between 1980 and 1996, inorder to exclude them.

• We then discussed various topicsinformally such as prions, filters,influenza and platelet cultures.

Since I was in Toronto already,Héma-Québec invited me to aconsensus conference on pathogeninactivation that took placeimmediately afterwards on March29 and 30.Different groups were present suchas regulatory agencies,pharmaceutical companies, recipientrepresentatives and specialists fromvarious fields. The consensus panelmade recommendations to informfuture decisions on the introductionof pathogen inactivation techniquesfor fresh blood components such asplatelets to reduce the potential risksof blood transfusions.Thus, we thought about the followingquestions during the conference: thetechnique's implementation criteria,the need, the impact on bloodtransfusion services, the level of risk,the cost and research required.Here are some of the topics dealtwith during the conference:- Microbiological reasons to considerpathogen inactivation in transfusion- Biochemical and biologicalmechanisms- Toxicological problems- The efficiency of pathogeninactivation- Clinical trials of pathogeninactivation on platelets

- Risk/benefit ratio- Regulations (FDA, European andCanadian)- Aspects of public health- Economic aspects- New technologiesThere were also posters by differentgroups that showed results fromresearch on various topics relatedto pathogen inactivation. I learneda lot. I'd like to thank Héma-Quebecfor having invited me to thisconference.

***

The Liaison Committee met on June2, 2007. We discussed a number oftopics brought forward by the SafetyCommittee, including TRALI andvCJD. The Committee signaled itsapproval of decisions made by theSafety Committee.We also discussed the level of leadin blood that can potentially bedangerous, especially in new-borns,but at present there is a lack of datato reach a conclusion. And wediscussed reactions to Gamunex®and the difficulty in recruitingmembers for this committee.What's more, we decided to changethe name of the committee whichwill become the RecipientRepresentatives ConsultationCommittee (RRCC). Perhaps thisname will help give people a betterunderstanding of the purpose of thiscommittee and will attract newmembers from other consumerassociations.Mr. Pascal Mireault (a member ofthe CHSQ Board of Directors) waschosen to replace Mr. DanielBaribeau. Mr. Baribeau sat on thecommittee for eight years as arepresentative of the CHSQ and I'dlike to thank him for his dedication,his time and for having representedus so well.

The CHSQ must continue to play arole as the watchdog of the bloodsystem, even if this becomes moreand more difficult.We have the same problems as otherorganisations in recruiting andinvolving our members andvolunteers because they can nowcount on products that are more andmore efficacious and safe. §

VARIOUS HÉMA-QUÉBEC COMMITTEES

byMarius Foltea

The publication of this newsletter has been madepossible thanks to the financial contribution of these

pharmaceutical companies:

Saskatchewan indexes MPTAPpayments

On May 8, the government ofSaskatchewan announced that itwas going to index the Multi-Provincial and TerritorialAssistance Plan (MPTAP) paymentsgiven to victims infected with HIVthrough a blood transfusion orblood products to the cost of livingand this, beginning with thepresent year.This prairie province joins Ontario,Manitoba, Prince Edward Islandand Newfoundland and Labradorto become the fifth province toadjust the MPTAP payments tomeet inflation so that the victims(or their families) are no longeraffected by a loss, which increaseseach year, of their buying power.There are only four provinces thatare holding out on indexation,including Quebec, New Brunswick,Alberta and British Columbia. NovaScotia had already put a financialprogram for HIV victims into placebefore the MPTAP was created.Let's hope that the decision bySaskatchewan will incite therecalcitrant provinces to make amove. §

F.L.

that we're really a class apart and thatmaybe the CHSQ doesn't know muchabout our needs.At the end of the day, there was aconsensus to the effect that support forresearch would be in the field ofinhibitors; this reassured me. I hope thatthe organisation will continue to beinterested in families living with inhibitors.Thank you for allowing us to speak.

Magalie RinfretMother of a son with inhibitors

I'm very satisfied in the results of thisstrategic planning exercise. It's also anaction plan that we've developed for thenext few years, and that's very motivating,even more since we now have a bettervision of our strengths and weaknesses.I hope that the conclusions of this exercisewill be welcomed by everyone.

David PouliotHemophiliac, CHSQ Board member

The CHSQ would like to thank Mr.Jean-Marie Bergeron, as well as allthose who took part in this strategicplanning exercise.  §

F.L.

STRATEGIC PLANNING (cont’d)front page cont’d >

ELSEWHERE IN CANADA

Being the parents of a little boy withhemophilia and inhibitors, our reality isa lot different from the majority of themembers of this organisation. So it wasvery important for me that this realitybe understood.Hemophiliacs with inhibitors are rareand the disease has a major impact ontheir quality of life and this, in a muchmore intense way than hemophiliacswithout inhibitors. The cost of healthcare associated with it is very high. Thephysical, psychological and socialdifficulties are major and can't beignored.Since there are very few parents in thissituation, we often have the impression

On May 12, CHSQ members,employees and partnersgathered together for thestrategic planning day at theEstrimont Suites et Spa inOrford.People with bleeding disorders,parents, families with inhibitors,Board and Committee members,people infected with HIV byblood transfusion and CHSQpartners (CHS, HemophiliaTreatment Centres, Héma-Québec and pharmaceuticalcompanies) were present.