WINTER 2005VOLUME 13, NUMBER 4

YOUTH ECHO

Whether or not the person hashemophilia, when a workplaceaccident occurs, impacting theworker's health, he can go to thehospital. According to the QuebecLabour Standards, the employeris obligated to pay the employeea full day's salary.Is it important to let your

employer know about yourhemophilia? This is a question alot of people ask and the answerisn't the same for everyone.

It probably makes sense to letpeople around you know aboutyour condition so that if anaccident ever occurred, thosepresent could act quickly and givethe proper information towhomever is giving first-aid to theperson with hemophilia.

However, we often have to workwith different colleagues,especially in large companies, andthe information about our state ofhealth may not be available toeveryone when it's needed.

Is it better for a hemophiliac tochoose a job that's not toophysically demanding? Onceagain, every case is unique.

No matter what, when you start anew job, it's better to talk to yourtreating physician to find out if thejob involves activities that couldput you, as a person withhemophilia, at risk for injury overthe long term.

It's important to note that if anaccident occurs on the job, anemployer must be informed.

Hemophilia and employmentby Martin Kulczykmartinkul@sympatico.caand David Pouliotdavid.pouliot@umontreal.ca

THE INHIBITORS FAMILY WEEKENDIN PICTURES

There's no specific answer as towhether or not you have to tellyour employer about hemophilia.It's important to talk to your doctorand it's also advised to find outeach employer's policy concerninginformation that must be divulgedbefore being hired. §

Parents got to take part in a conference given by NichanZourikian, physiotherapist with the St. Justine HospitalInhibitors Treatment Centre.

During the weekend, little Loïc Gagnerhad a great time.

Daphnée and Benjamin Landrydidn't want to miss anything.

One of the highlights of the weekend was undoubtedly thevisit to the Capelton mines, helmets and all.

A WORD FROM THEEDITOR

Last November 18th, the FederalHealth Minister, Ujjal Dosanjh,announced that he had signed aMemorandum of Understanding withthe lawyers representing the'forgotten victims' of the 1986-1990Class Action Ruling. By virtue of thisagreement, the federal governmentformally agrees to compensate peoplewho contracted HCV through theblood system before January 1, 1986and after July 1, 1990.While this is an important stepforward, the actual amount of thecompensation and the schedule forits delivery is yet to be known. Allparties are still negotiating and thisprocess will likely take months.The CHS and the CHSQ have alwaysmaintained that there should be nodistinction between hepatitis C victimsof contaminated blood based uponthe date on which they were infected.Likewise, there should not be any

difference in the amounts to whichthey are entitled. This compensationprogram should be identical to the oneoffered to people in the 1986-1990group.The minister must be willing to freeadditional funds to meet the demandand, ideally, appoint a differentadministrator for these funds.Years have passed and the inequalitybetween victims continues. It is timeto put an end to procrastination andpay compensation to the 'forgottenvictims' in a timely manner. They'vealready been waiting too long.On a different topic, the news isencouraging concerning indexation ofthe Multi-Provincial and Territorial AidProgram (MPTAP). Following Ontarioin May 2001, two other provinces inturn, Manitoba and Newfoundland-and-Labrador have shown theirleadership over the past few monthsby indexing the annual payment to thecost of living for those contaminatedwith HIV through blood or bloodproducts.Let's hope this movement will createa domino effect on the other provinces,including Quebec, who have refusedto budge on this matter to date.Remember that, for all practicalpurposes, this annual incomeconstitutes the only program managedby the provinces and territories thatisn't indexed to the cost of living. §

SUMMARY

EDITORIALSTAFFEditor:François LarocheContributors:Claudine AmesseNathalie AubinFlorence BourdeauMylene D'FanaMarius FolteaMartin KulczykLisa-Marie MathieuAline OstrowskiDavid PouliotChantal RoyPatricia StewartProofreaders:Patricia StewartMichelle SullivanPage layout:François LarocheTranslation:Patricia StewartMichelle Sullivan

larochef@sympatico.ca

2

Youth EchoHemophilia et employment 1

The Inhibitors FamilyWeekend in Pictures 1

A Word from theEditor 2

Editorial 3

A Word from theExecutive Director 4

CHSQ Activities 5

Parents’ CornerThank youDenise and Francine! 6 & 7

Nurses’ CornerUpdate on ElectronicTreatment Logs 8 & 9

National FunraisingCommittee 9

Focus on Hepatitis C12th International Symposiumon Hepatitis C Virusand Related Viruses 10

ProfileCHS Chapter Leadership AwardWinner: François Laroche 11

Winners of the 2005-2006Scholarships 11

Fundraising 12

CALL FOR NOMINATIONSTo the CHSQ Board of Directors

On March 18, 2006, during the Annual General Meeting, members of theCHSQ will elect their 2006-2007 Board of Directors. We're always on thelookout for people who possess skills and experience and who wish to becomeactively involved in the decision-making process of the organization.In this mailing, you'll find a Nomination Form as well as a form to be completedby all interested parties. Please note that if you know someone whose expertisecould be of help to the CHSQ but who doesn't have a direct family connectionto a bleeding disorder or the consequences of a blood transfusion, hisnomination can still be presented and this person would simply have to applyto the CHSQ and become a supporting member. The Board of Directors willevaluate the pertinence of his candidature and may provide him with supportingmember status.For more information about the responsibilities and work of the members ofthe Board of Directors, you can contact our office.The nomination forms must be received, by March 8 at the latest, along withthe pertinent documents. Thank you for your support in this process.

byFrançois Laroche

EDITORIAL

Fundraising is a very importantpart of this organization; bothnationally and provincially weare in need of the extra dollarsthat can be raised. That's whyFlorence Bourdeau joined ouroffice staff in October and isworking very hard to make sureall of the colouring books aresold and that we are able tokeep all of our programsrunning.

In May 2006 the World Congressof Hemophilia is coming backto Canada. CHS will be hostingthis international event inVancouver from May 21 to 26and our delegates to theNational Board will have thechance to participate as the CHSannual meeting will be held inthe days following the congress.

I would like to wish you all aVery Merry Christmas and aHappy New Year filled withhealth and happiness for all. §

As the year comes to anend, many new things arehappening. The winter seasonwill bring snow and the NewYear will bring another life.Our Executive Director AlineOstrowski is expecting her firstchild at the beginning ofFebruary.

As she will be taking maternityleave, Michelle Sullivan (seeA word from the ExecutiveDirector) will replace her inher absence. I want to wishAline and Eric the best for thearrival of their little miracle.

While our Board is workingtowards a balance budget, theCHS National Board voted fora deficit budget again in 2006.The Resource DevelopmentCoordinator hired by CHS waslet go from her duties andthey're searching to fill thisposition once more. Asignature event is beingstudied to take place sometimein the year 2006 or the springof 2007.

3

mylenedfana@bellnet.ca

In May 2006 theWorld Congress of

Hemophilia is comingback to Canada. CHS

will be hosting thisinternational event inVancouver from May

21 to 26 and ourdelegates to the

National Board willhave the chance to

participate as the CHSannual meeting will be

held in the daysfollowing the congress.

A WORD FROM THEPRESIDENTby

Mylene D’Fana

A WORD FROM THE EXECUTIVE DIRECTOR

4

Our organisation went throughmany beneficial changes during2005.After the initial hiring of a person tohandle fundraising full-time, it wasdecided this autumn to hiresomeone who would share her timeequally between fundraisingactivities and those that call for amore direct contact with members.It's within this context that, in earlyOctober, following a rigorousselection process, FlorenceBourdeau was hired to fill thisposition.Within a few short weeks, Florencemanaged to show us herdetermination to reach fixedobjectives, bringing us her energy,her sense of organization, herpleasant manner and her ideas forour activities. Those who haven'tyet had the chance to work with herwill be able to do so over the nextfew months and profit by her skills.Filling this position is part of thestrategic planning exercise that tookplace in June, which we presentedin the last editorial. In accordancewith this plan, we've installedmechanisms which will allow us tospend more time on advocacyissues, develop a volunteer trainingprogram, increase our membership,increase the volume of informationto our members and find furtherfunding for research.We now have to respect ourdecisions, notably not to initiate newprogram activities, because ourbudget couldn't support them at thesame time as the present initiativesaimed at meeting theaforementioned objectives.In 2006, along with the four issuesof L'Écho du facteur, you'll receivedocuments in May and Octoberwhich will keep you informed of

the evolution of various ongoingfiles. As another initiative, throughthe hemophilia treatment centres,we'll be sending a letter out toeveryone with a bleeding disorderasking them to become a memberor a subscriber. The hematologistsaffiliated with each centre willinclude a letter encouraging theirpatients to get involved in ourorganisation.In order to beable to respectthe orientationsdefined by themembersactively involvedin theorganisation, wemust double ourefforts infundraisingactivities. Manyof youencouraged usthis year byparticipating inthe Bowl-a-thonand byrespondingpositively to ourrecent requestfor donationsand we're verythankful. As forthe colouringbook activity, unfortunately, thereare very few volunteers participatingand even if the few who do getinvolved spend a great deal ofenergy in selling a large number ofbooks, we need to recapture thesame level of member participationthat we had many years ago.We're aware of the fact that today,we're all solicited by many causesand we sometimes feel like we'redrowning in requests. However, theCHSQ remains the principle causeable to maintain and improve yourquality of life and that of your family,because it is the only one thatrepresents you, defends your rightsand meets your needs. We need allof you to get involved so that wecan continue to accomplish ourwork.If we seem to solicit you a lot andare always looking for new ways forour members to get involved, we

aostrowski@schq.org

need to take the time to thank thosewithout whom the CHSQ would notbe able to continue offering itsservices.Of course, all our financial partnersand donors play an essential role inallowing us to function as anorganisation and we are extremelygrateful for their loyalty.The staff at the office devotes itselfto the organisation and doesn't stopto count their hours or be put off bythe stumbling blocks they encounteras limits to their involvement. Forthese reasons, and for the quality oftheir work, we thank them.Our volunteers are an invaluable andessential resource for the CHSQ;they're at the heart of decisions andactions, always ready to give of theirtime, energy and skills. From thebottom of our hearts and on behalfof the organisation: Merci! We can'tthank you enough.And finally, to all our members andsubscribers who put their trust in usyear after year and give us themandate to represent them, thankyou for supporting us.There'll be a few staffing changes in2006; because of my maternity leavewhich begins in January, we've hiredMichelle Sullivan to take over asInterim Executive Director on a part-time basis until October. Michellealready worked as part of the CHSQteam in 2004; she was responsiblefor the colouring book campaign andobtained excellent results. Possessinga solid experience incommunications, public relationsand management of humanresources, Michelle has all theexperience and skills needed to fillthe mandate she's been given. Inorder to help her in her work, to ourgreat delight, Geneviève has agreedto work full time during 2006.Florence will continue to manageher files and work closely with CHS-National on fundraising.The CHSQ has enough resources inplace to assure the continuity of theactions accomplished in 2005 andwill do all in its power to find extraresources that will allow it toundertake projects on a larger scale.May you enjoy the rest of the yearand may 2006 be even better! §

2005 was a busy, productive and structured one for the CHSQ;this bodes well for 2006, a year which will call upon everyone's involvement.

byAline Ostrowski

The CHSQ

remains the

principle cause

able to

maintain and

improve your

quality of life

and that of

your family,

because it is the

only one that

represents you,

defends your

rights and

meets your

needs.

5

CHSQ ACTIVITIESdue to immobilizations and asktheir questions to Nichan Zourikian,physiotherapist with the SaintJustine Hospital’s inhibitors centre,before joining their children,employees and CHSQ volunteersto visit the Capelton mines, deckedout in hardhats.

The next day, parents gathered fora café-rencontre, facilitated byHélène Paré, psychologist, to talkabout overprotection. Meanwhile,the children did Hallowe’en craftsunder the capable eyes ofvolunteers, facilitators and SylvieLacroix, nurse coordinator for theSaint Justine Inhibitors ReferenceCentre.

Evaluations which resulted from thisweekend, which was rich in sharingof all kind but lacking in sunshine,were very positive, encouraging usto plan for another 'inhibitors' familyweekend for Fall 2006.

CHSQ InhibitorsFamily Weekend

Seven families living with inhibitorsmet last October 15 – 16 at theManoir des Sables in Orford in theEastern Townships to share twodays of workshops, meetings andfamily fun.Based on recommendations fromparticipants last year, the schedulethis year alternated betweenworkshops and family time.On the first day, parents were ableto learn about the consequences

aostrowski@schq.org

Student scholarships incollaboration with Bayer andBaxterCongratulations to Julia Page andDavid Pouliot, who are the happywinners of a scholarship offered byCHSQ in collaboration with Bayerfor the amount of $1000 each, andto Martin Kulczyk, who won anequivalent scholarship offered incollaboration with Baxter.

We wish you success in your studiesand hope that these scholarshipswill be of help.

Membership card orsubscription renewalEnclosed you’ll find a subscriptionform for 2006. To keep us properlyinformed, it’s important for you totake the time to complete the formand to return it to us, along withyour payment, by the February 15,2006 deadline. §

The Christmas activity for families with young childrenin the Quebec area took place Saturday, December3, 2005, at the Museum of Civilization in Quebec.Seven families participated for a total of 11 kids and15 adults; there was lunch (Isabelle and Chantalworked all night to make this great lunch…justkidding!) and we got the chance to chat and welcomea new young family from Shawinigan who wereattending their first Christmas gathering with us.Then we visited the Place du Moyen-Âge with thekids who had a great time with all the costumes thatwere provided for them. And of course,the not so young joined in the fun,as you can see for yourself…a picture's worth athousand words!!!

C.R.

Christmas Social Activity in Quebec City and in Montreal

byAline Ostrowski

Recognize these people? That'sright! It's Karl and Chantal...

Adélaïde and JacobLaroche had a lot of fun.

And what can I sayabout Dylan Poulin...

Youngsters from the Montreal area seemed toappreciate their trip to the Biodome.

Last December 3, five families (parents, grandparentsand children) braved the arctic cold to enjoy a morning

full of surprises and outdoor family activities at theMontreal Biodome.

After having listened to an exciting storyteller with aquestion and answer period and songs featuring Caillou,

the 21 participants, who ranged in ages from 1 to 77,visited the ecosystems to discover the flora and fauna ofthe tropical forest, of a Laurentian forest and of the Arctic.This was followed by a pot-luck lunch in a room speciallyreserved for the CHSQ, where parents held discussions

while the kids also discussed things… in their own way…Thanks to all the families who participated

for their joviality on a Saturday morningand their willingness to share.

F.B.

Louis-Charlesmade a royalimpression...

PARENTS’ CORNER

6

Thank you Francine and Denise!medical examinations, diagnosedhemophilia.Luckily, I received a telephone callfrom my aunts Francine andDenise the very day we receivedthe results of the analysis. Theydefinitely helped us accept thissituation. In reality, observinghemophilia from afar and livingwith it on a daily basis are twovery different things.That said, the nature of thedifficulties experienced by myaunts compared to what weexperience today is very different.My goal is therefore to payhommage to all the mothers andfathers of children with hemophiliawho were born at a time whenliving with this illness wasunfortunately very difficult.I'm speaking specifically, of course,about people around me, becauseit's their situation I observed froma distance... However, I also speakto all parents of hemophiliacs,because the difficulties at that timewere similar for all. So, here istheir story, as it was told to me:Francine was already pregnantwith Maxime when her eldest sonAnthony was diagnosed withhemophilia. Like the majority ofhemophiliacs, Anthony had largehematomas on his body as wellas on his head. The doctors, whodidn't suspect hemophilia at first,believed it to be leukemia or bonecancer. It was only later on, onceall the test results came backnormal, that hemophilia wasconsidered and confirmed.So, when her second son Maximewas born a few months later,Francine knew right away that healso had hemophilia when a heelpuncture left a hematoma. Bloodtests only served to confirm herfears. So, Francine returned hometo Saint-Victor de Beauce with twohemophiliac babies.Following the diagnosis ofFrancine's two sons, the entirefamily underwent blood tests inorder to determine who carriedthe defective gene. Finally, out offive girls and two boys, there were

I’d like to wish you all a HappyNew Year!I don’t know if you’re one of thosepeople who make New Year’sresolutions, but let me tell youabout my resolution for the comingyear. Those who know me well knowthat I’m not very organized, so myresolution for 2006 is to becomethe most organized mother in theProvince of Quebec, nothing less.I’m going to start with all thoselittle bits of paper that I accumulate,telephone numbers, savingscoupons, newspaper clippings (mybut wasn’t that article on green teainteresting!) and even recipes (askmy husband, he’s never understoodhow I can have so many recipesand still not know what to makefor supper). I have so many recipes,he thinks that I collect them; I can’thelp it. I can’t stop myself fromcutting out every recipe I see. Ofcourse, over the years my collectionhas grown considerably. I don'teven think I'll have time to try allthese new recipes by the time I'm97! Oh well, you never know.I don't think I'm completelydisorganized, no! After all, I'vebeen working on this problem formany years. I began a system of“little piles”: one pile for recipes,one pile for things to read, one pilefor pictures to file, one pile for thekids’ crafts, one pile of “souvenirs”,and of course, one pile for thingsthat can’t be classified!The only problem is that sometimesI look for something that could bein more than one pile at a time. Allright, so my system isn’t perfect!I think I have the ‘I may need thissome day’ syndrome so I don’tthrow much out…just in case.

The other day I was talking with amother who said that after havingread L’Echo du facteur, she threwit out. Holy smokes! I was stunned.I thought everyone was like me andkept every issue religiously!!Anyways, I just hope yourresolutions are easier to keep thanmine…I’ll leave you with this familytestimony. If you want to share yourstory or talk about a subject inparticular, don’t hesitate to contactme.

Thank youFrancine and Denise!

Hello to all!First off, I'd like to introducemyself: my name is Lisa-MarieMathieu. My husband Yannickand I are the parents of a littlehemophiliac boy with severe factorVIII deficiency. Our son Dylan isthe fourth hemophiliac in myfamily, as I have three cousins whoare also afflicted with this illness.They are Anthony and MaximeVeilleux, who are the sons ofFrancine Mathieu and François-Xavier Pellerin, who is the son ofDenise Mathieu. All three arepresently in their twenties.Before starting a family, I didn'tknow I was a carrier of thehemophilia gene. At the age of 11,I underwent a series of medicaltests that determined that I was'completely normal from acoagulation point of view' andtherefore not a carrier... In orderto be doubly sure, I contacted adoctor in 2001 in order to undergothe tests once again, but heassured me that if I wasn't a carrierat 11 years of age, I could not bea carrier at 24.So imagine our surprise when, at5 months, our son developed largebruises on his rib cage! I didn'twant to believe it was hemophilia,but my mother Lorraine, who veryclearly remembered her nephews'hematomas, immediately had herdoubts. We consulted our familydoctor who, following a series of

lescanonniers@sympatico.ca

byChantal Roy

PARENTS’ CORNER (cont’d)

7

only three carriers and nohemophiliacs. The three carrierswere Francine, already the motherof two hemophiliacs, Denise, whogave birth to Francois-Xavier, alsoa hemophiliac, and finally,Lorraine, my mother, who gavebirth to four children.I am the only one to whom shetransmitted the defective gene, mysister and two brothers beingcompletely normal from acoagulation point of view.Following the chaos of analysesand results, life continued. We allknow that, ironically, hemophiliacboys are all very active and a littlereckless. Francine and Denise'schildren were no exception.Several incidents, both major andminor, forced them to race to theHemophilia Treatment Centrelocated in Quebec City, about anhour and a half from their homes.These visits, that took place insummer as well as winter, in goodweather as well as bad, werenumerous and very long,especially with two younghemophiliacs still at home.Treatment at that time consistedof giving fresh frozen plasma orcryoprecipitates infusions becausethe factor, as we know it today,didn't exist. Treatments didn't takefive minutes like they do today -they lasted over an hour!Another major difficulty for theparents: the uncertainty that camewith every injection. What if itcontaminated one's child with HIVor hepatitis? Of course, parentswanted the treatment in order toeliminate the bleeding, but whatif the treatment itself made the

child even more seriously ill?Imagine the dilemma!!!Hemophilia was even less wellknown during that period—the1980s—than it is today, so imaginehow difficult it was to find daycare! It's still difficult even today, ashemophilia frightens those whoaren't familiar with the condition.There is still work to be done tosensitize the daycare industryabout this illness and it is theresponsibility of every one of usto do our part. The more we talkabout it, the more it will be known.Prejudice will diminish as a result.Today, despitethe fact that wewish that ourson did not haveto live withhemophilia, werealize howlucky we are tolive now and notduring the eramentionedpreviously. Weare fortunate tolive near a HTC,which greatlyimproves ourquality of life. If we suspectbleeding, we only have to travel15 minutes to find out if aninjection is necessary.The second major benefit: withnew factors, developed almostentirely in the lab, we can nowhave our son treated withoutfearing illnesses transmitted byblood products. Factors are 99%safe, and only the infinitesimalquantity of albumin in present-dayfactors makes it impossible to

declare them 100% safe.Finally, our daycare centre agreedto welcome our son with openarms, despite his hemophiliadiagnosis, and helps us promoteknowledge about this condition inorder to facilitate the integrationof all hemophiliacs in daycare.Dylan is treated no differently fromother children, with the exceptionthat for a certain period of time,he had to wear protectiveheadgear, to the envy of all hisfriends at daycare.In conclusion, we want to say toFrancine, Denise and all the otherparents who experienced a similarsituation: HATS OFF TO YOU!You have earned our greatadmiration for having faced sucha difficult situation with a smile.Rarely have we heard youcomplain about theinconveniences and worriesrelated to hemophilia. Your boyswere raised the same way as their'normal' cousins and were notoverly protected or limited in theiractivities. My aunts knew how todeal with what life offered and,despite difficulties, continued toadvance and progress.We'd like to extend a big thankyou to Francine, Denise, Anthony,Maxime and François-Xavier, forhaving had the patience andkindness to answer our sometimesridiculous questions following ourson's diagnosis.We hope one day to offer similarassistance and support to otherparents who receive a hemophiliadiagnosis, thereby continuing thechain. §

Lisa-Marie Mathieu

A MOMENT TO REFLECT

“Truths that we don't want to hear are often those weneed to hear the most.”

Jean de La Bruyère

We all knowthat,

ironically,hemophiliacboys are allvery activeand a littlereckless.

Dialog/EZ Log

In January of 2003, twenty or sopatients from Sainte-JustineHospital with severe Factor VIIIdeficiency were invited toparticipate in a pilot project aimedat comparing the use ofcomputerized treatment logs withstandard paper ones. Thetechnology was provided byArrowhead Electronic Healthcare,a Texas firm hired by the Bayercompany.The participants were asked torecord their bleeding episodetreatment log data over a period ofthree months, both on paper andin Dialog, a Palm Pilot program. Aninformation session was held at thebeginning of the project to distributeand explain the Palmsto thepatients.The confidentiality of data isensured through a personalidentification code known only bythe healthcare professionals of theHemophilia Centre. Patientsexperiencing technical difficultiescan access a French language helpservice through a toll-free number.Once a month, patients obtain theirconcentrate through their usualblood bank and are subsequentlyrequired to contact the clinic forinventory adjustment. With the useof each vial of concentrate, theyenter the data into their Palm,transmitting it to the clinic througha telephone line. The proceduretakes one minute.The Palm's base can bepermanently plugged into thephone without interfering with itsnormal functions. While patientscan transmit information at theirconvenience, we stronglyrecommend that they do so eachtime they use their concentrate.

6) Provide a greater number ofoptions for the use of graphics.Despite these potential areas ofimprovement, we recognize that theuse of electronic treatment logsrepresents the future of treatmentdata transmission.In January 2005, Dialog was replacedby a new version, EZ Log. TheEZ Log program is taught on aprogressive basis to all Sainte-Justine Hospital patients who usefactor concentrate on a regularbasis. The patients who receivedinstructions during the grouptraining session now use theelectronic version exclusively.Improvements over the previoussystem:1) Product inventory is adjustedwithin a reasonable delay by hospitalpersonnel. Products that have notyet been placed into inventory priorto their usage can be compiled ona negative basis by the patient. Theinventory is readjusted during theupdating process.2) The treatment date is easier toadjust for Palm users.3) Graphics comparing frequency ofinjection and number of bleedingepisodes in a precise site areaccessible by healthcare personnel.4) Patients using a concentrate otherthan Factor VIII also have access tothe program.5) Factor VIII concentrate KogenateFS now comes with a bar codewhich facilitates data entry, allowingpatients to 'scan' lot numbers ratherthan enter them manually.6) Nursing staff can now use Excelsoftware to complete all desiredcalculations.7) Patients can access theircomputer data over the Internet.Sainte-Justine Hospital personnel isin constant communication withArrowhead personnel in order toimprove certain weaknesses notedover the course of the first year ofsoftware usage. A new andimproved version, incorporatingsuggestions made by patients andpersonnel, is planned.After a year of implementation, theuse of electronic treatment logsappears to be an advantageous

This way, the administration of thetreatment and inventorymanagement remains constantlyup to date.The majority of patients consider iteasy to use Dialog. They prefer itto the paper version for thefollowing reasons: greaterprecision, easy to complete, morepractical while allowing bettertreatment management.For nurses, the advantages are asfollows:1) Easier access to the patients'recent treatment log, allowing afaster and more efficient evaluationof the treatment plan, as needed.2) Superior product management.3) Work is facilitated through thevarious calculations performed bythe program, such as the numberof units per kilo utilised.4) Charts or calendars which allowan evaluation of the frequency oftreatment injection, at a glance.5) Less paperwork, resulting inlowered risk of loss of data.6) Easier to obtain patient treatmentlogs upon a new order of Factorconcentrate.Suggestions to improve theprogram are as follows:1) Adjust patient inventory in realtime2) Integrate the Dialog computersystem into the CHARMS computersystem in order to avoid duplicationof data. CHARMS being thecomputer program used inCanadian Hemophilia Centres for,among others, the management offactor concentrate.3) On the Palm: include mandatorysupplementary data entry in casesof bleeding episodes. For example:the use of analgesics, the delaybetween treatment and the firstsymptoms, symptoms present etc.,in order to provide the heath teamwith a better evaluation tool.4) Facilitate data entry of the dateof the treatment in relation to thedata entry date.5) On the Web site used by nursingstaff, provide access to the totalunits used in prophylaxis in relationto the total units used for bleedingepisodes.

8

Update on Electronic Treatment LogsNURSES’ CORNER

byClaudine AmesseNurse Coordinator at the Sainte-JustineHospital Hemophilia Treatment Centreand Nathalie AubinNurse Coordinator at the Montreal ChildrenHospital Hemophilia Treatment Centre

NURSES’ CORNER (cont’d)

9

The first meeting of the NationalFundraising Committee took placeon the weekend of November 12 -13 in Toronto. This Committeebrings together members fromevery chapter, representingemployees and/or volunteers.Since our founding, ourorganization has counted on thegenerosity of the hemophiliacommunity from time to time andon people who have an interest insupporting the programs dealingwith this disorder. Over the pastfew years, mainly due to the taintedblood tragedy of the 1980s, mostfunding has come fromgovernments, the pharmaceuticalindustry as well as, to a lesserdegree, fundraising activities.

The CHS Board of Directors (MyleneD'Fana, Razek Syriani and MartinKulczyk are our representativesthis year) has realized that it'simportant for the Society to findother sources of revenue in orderto sustain the infrastructure andthe capacity of the CHSQ to growand to offer programs and servicesto its members. The NationalFundraising Committee wascreated this spring.Mylene, Florence and I are therepresentatives for the QuebecChapter on the NationalFundraising Committee this year.This Committee is composed offundraising professionals andvolunteers.One important goal of thisCommittee is to be able to sharenew fundraising resources(personnel, methodologies,fundraising expertise, supportsystems, etc) among the chapters.We were able to hear about whatthe other chapters do to collectfunds such as gala evenings orsuppers, bingos, ticket sales to winprizes, etc.

system on several levels, both forpatients and healthcare staff.

ADVOY

Advoy, an electronic datatransmission system, was introducedat The Montreal Children's Hospitalin September 2004. This system wasdeveloped by BAXTER BIOSCIENCEand is used by patients in severalcountries around the world. Thissystem facilitates, clarifies andaccelerates the transfer of databetween the home and the HTC.The patient can access the Advoysystem using the Internet connexionon his own computer, a websiteinterface and a password, or can usea Palm Pilot and transmit informationthrough a telephone line. Only thehealthcare personnel of the HTC hasaccess to patient information. Theinformation gathered is protected andremains confidential.

The main advantages of the systemare as follows:• Data is automatically sent to theHTC• Access to a voicemail service isavailable.• Patients can send their treatmentlogs from anywhere in the world,providing they have computer access.

The disadvantages are as follows:• Difficulty of use with certainsoftware.• The Palm Pilot version is much moredifficult to use and the length of timeneeded to enter data is significantlylonger.For healthcare professionals, it ismuch easier to do clinical followups,as information is more precise anddetailed. As well, information isreceived on a more regular basis. Asa result, we can act more quickly andbring about changes to treatmentwhich will prevent target joints.

We can also use this system as ateaching tool during bi-annualevaluation visits. We are able to printout a summary of patient infusionsand/or bleeding episodes in graphicformat. A picture is worth a thousandwords!One must remember that bleedingtreatment logs will always be moreprecise if data entry is done shortlyafter a bleeding episode.Several of our patients have confirmedthat they are satisfied with this newtechnology. We strongly encourageour patients to use the Advoy systemfor all the reasons listed above.However, use of this system remainsvoluntary. §

Marius.Foltea@mdsinc.com

NATIONAL FUNDRAISING COMMITTEEMany subjects concerningfundraising went on during the 2-day session. But most of all, therewas a good discussion on theopportunity to hold a countrywideevent in order to raise funds andincrease the visibility of ourorganization. The precise nature ofthe event has yet to be defined. Forexample, this event could be a walkor bike-a-thon, an activity thatwould take place in a park or otherpublic location.Because there have been changesto the Committee since November,it's too early to be able to give anyprecise details about events.However, I'd like to take thisopportunity to encourage you tohelp us with all our fundraisingactivities such as selling colouringbooks (Brimblehorn…).We must all help by getting involvedin order to collect funds to assurethe viability and growth of the CHSQin the years to come. What's more,if you have any suggestions,comments or questions, don'thesitate to let me know aboutthem. §

byMarius Foltea

FOCUS ON HEPATITIS C

10

The two most interesting sessions, in myopinion, were held on the last day of thesymposium, when focus shifted tovaccines and antivirals. One of the bestleads being examined for the discoveryof a vaccine seeks to increase theefficiency of CD8s, which are weakenedby HCV in a person with a chronic formof the illness. The technique would consistof blocking the expression of the PD-L1enzyme. PD-L1 is produced by PD-1, acomplex which plays an important rolein the exhaustion of CD8s, which are keyplayers in our immune system. Resultsare expected to be seen within five to tenyears.As for antirvirals, the challenge lies in theidentification of efficient molecules for allgenotypes and potential mutations of HCV.Much hope lies with protease inhibitorsand, to a lesser extent, with polymeraseinhibitors. The two medications takentogether, with or without interferon, wouldprovide an interesting therapeutic optionfor the future. Similarly to HIV treatment,we must consider a multitherapy approachto HCV in order to obtain maximumeffectiveness, notably in countering itsfrequent mutations.The most promising discovery, however,involves an analogue molecule much likecyclosporin, currently called NIM811,which, apparently, may prove to be veryeffective in fighting HCV. In addition, thismedication would also be very effectiveagainst HIV, which is excellent news forthose who are co-infected. Cyclosporin isa medication which has been used for along time because of itsimmunosuppressing effects (notably incases of organ transplants). This newmolecule is practically identical—only aportion of its structure has been modifiedto attenuate its immunosuppressoreffects—and there is hope that it will beeasily tolerable.Several other molecules are beingdeveloped and, while they remain in thepreliminary stages, we can be optimisticas to their chances of success.Researchers know more and more aboutHCV, which seems to offer moreinteresting therapeutic options than HIV. Those touched by HCV could well benefitfrom them in the near future. §

The 12th International Symposiumon Hepatitis C Virus and Related Viruseswas held from October 2nd to 6th at theMontreal's Queen Elizabeth Hotel. Closeto 800 people from the four corners ofthe world attended this medical andscientific symposium, honouring keyresearch.The quality of presentations was equalledonly by the competence of the leadingexperts (biochemists, microbiologists,molecular biologists, researchprofessionals, infectologists, virologists,hepatologists, oncologists to name buta few...) who were in attendance to sharetheir studies and the results of theirresearch. The technical and specific levelof the presentations was such that, inorder to fully grasp the scientific processinherent in the research in question, onehad to be trained at the highest levels.I tried to follow along to the best of myability, applying 100% of the knowledgein biology and chemistry I'd picked up atschool.The symposium was divided into eightmajor sessions:1. Viral Kinetics and Evolution2. Co-infection and Challenging Areas ofTherapy3. Virus Host Interaction, Pathogenesisand Oncogenesis4. Structural Proteins, Virus Entry andAssembly5. Non-Structural Proteins, VirusTranslation and Replication6. Innate Defenses7. Adaptive Immunity8. Vaccines and AntiviralsFollowing opening remarks by Dr. DanielLamarre, President of the OrganizingCommittee, Dr. Jenny Heathcote, ofToronto, was the first to step up to thepodium. After a few preliminary remarks,she presented summary statisticsconcerning the Hepatitis C virus (HCV). Apparently, there are approximately 170million HCV carriers worldwide. Of these,30% develop cirosis, while between 1%and 4% develop liver cancer every year.Factors increasing the risk that a HCVsubject will develop cancer are: tobaccoconsumption (carcinogenic), alcohol

consumption (increases fibrosis), obesity,being of the male gender (diminishedimmune response) and advanced age(reduces tissue regeneration).What I retained from the Viral Kineticand Evolution session, was that becauseof multiple mutations of the virus, creatingseveral sub-categories out of the sixgenotypes actually known in HCV, it isnecessary to think of a new form ofstandardized nomenclature and of HCVclassification.As well, innovative techniques andprocedures were presented, which allowfor increased efficiency in predicting thesuccess of the current peginterferon andribavirin treatment, in any given patient.Dr. David Thomas of Baltimore began hispresentation of Co-infection andChallenging Areas of Therapy on familiarground, such as the fact that response tointerferon/rivarin treatment is reducedin subjects with HCV genotype 1, andthat HIV reduces a sustained viralresponse to the treatment (interferonbeing less efficient for HIV+). He alsovoiced his opinion about the challengesto be overcome in the case of co-infection,such as the clinical (person's state ofbeing), biological (as HIV affects thetreatment of HCV), and sociologicalobstacles (how to make treatment moreaccessible) which are in factsurmountable.I will spare you the scientific and highlytechnical details of the research presentedin the sessions dealing with pathogenesisand oncogenesis, structural and non-structural proteins, innate defenses andadaptive immunity. These presentations,so easily grasped by microbiologists,biochemists and other researchprofessionals, could not be followed orunderstood by the common mortal, sinceeven the title was incomprehensible tome, being so disconcerting. However,here are some of my personalconclusions:• The genome and biomolecular structureof HCV is much better known today.• The replication procedures and virustranscription, and, notably, the importantactors and their roles are also much betterknown.• Consequently, new therapeutic targetsare identified in the construction ofantiviral molecules.• Better known today, are the factorswhich favour the mutation of the virus.• Better known today, are the immunesystem's defense mechanisms whenconfronted by HCV.• The future holds promise, since thevirus can be attacked on several fronts,but there remains much work to beaccomplished.

12th International Symposium on Hepatitis C virus and related viruses

larochef@sympatico.ca

The Focus on Hepatitis Ccolumn has been made possible

thanks to the financialcontribution of

Schering Canada.

byFrançois Laroche

PROFILE

for the Quebec Chapter. He canalways be called upon torepresent all facets of the CHSQ,having years of experiencelobbying various governments forHIV and HCV compensation and,presently, MPTAP indexation.François is responsible for theComprehensive Care Committee,recently dealing with therestructuring of hospital fundingfor blood products. François hasjust been appointed to the QuebecHemovigilence Committee torepresent users of blood products.François' greatest passion in lifeis his family: his wife, Marie-Claude who supports him in hiswork and his children, Jacob andAdelaïde, who share their fatherwith all of us. His second passion(apart from the CHSQ) is probablygood food and wine. He has awell-stocked wine cellar and willproudly explain the differentcharacteristics of each bottle.While he's interested in all sports,he's an avid pool player and alsodoes volunteer work for varioussports organisations, working thevideo cameras, driving peoplearound or welcoming peeweeplayers into his home. Françoisis a team player, putting this

11

On November 26, 2005, theCHS-National held its awardsbanquet. This year, the winner ofthe Chapter Leadership Award isFrançois Laroche. This award isgiven to a person who hascontributed significantly to thedevelopment and growth of thechapter over the years.François has been activelyinvolved in the CHSQ for 13 years.His first major contribution wasto revise the newsletter, applyinghis journalism skills and buildingit into an importantcommunication tool, bringingCHSQ activities and informationto all members. François quicklyjoined the executive has servedas president for two mandates,as well as vice-president morethan once.Over the past 13 years, Françoishas either chaired or served onalmost every committee. Hisobjectivity and keen analyticalsense make his opinion soughtout and respected by all whowork with him.During the past few years,François has been a major playerin the restructuring of the CHSQ.Serving as Interim ExecutiveDirector as a volunteer, hetraveled almost weekly betweenMontreal and Quebec City wherehe lives. This allowed the QuebecChapter to make the difficulttransition of reorganizing themanagement of the CHSQ whilehe filled in for the lack ofemployees to run theorganization. Despite the lack ofpersonnel, there was little changeto services offered to members.He was instrumental in the hiringprocess for new staff andcontinues to work closely on allprojects as a member or chair ofmany committees.His understanding of complexsituations and his ability toexpress himself have madeFrançois the official spokesperson

quality to work in his dealingswith committee members.Sometimes he's a player,sometimes the captain while atothers times, the coach.Working tirelessly for the cause,his dedication, integrity andtalents have brought the QuebecChapter through many difficultmoments. He is a gentleman andrespected by all who know him.He's always ready to act asmediator in difficult situations,bringing consensus betweenconflicting opinions.A family man with exceptionalleadership skills and devotion tothe chapter, well respected,articulate and respectful of allmembers, he's a model for all tofollow. We thank him for hiscommitment. §

P.S.

CHS Chapter Leadership Award Winner: François Laroche

Winners of the 2005-2006 Scholarships

Julia Page received a$ 1 0 0 0   s c h o l a r s h i poffered in collaborationwith Bayer.

Martin Kulczyk (right), receivinga $1000 scholarship offered incollaboration with Baxter, alongwith Judith Bourassa, from Baxter.

David Pouliot (left), receiving a$1000 scholarship offered incollaboration with Bayer, alongwith Alain Vaugeois, from Bayer.

FUNDRAISING

fbourdeau@schq.org

Two months ago, I joinedthe dynamic little team at theCHSQ as the Coordinator ofPrograms and Fundraising, andI'm very happy to be part of thepresent and future projects of theSociety.After spending a number of yearsin positions of responsibility inmarketing and communications,I turned towards the non-profitsector. For two years, I wasresponsible for fundraising andprograms in a community-oriented organization offeringservices to families.

Fundraising visionI consider that fundraisingactivities are the achievement ofa community of people withdiverse talents and this is why Ihave the double objective ofdeveloping the support of yourpersonal or collective initiativeswhile reinforcing the novelfundraising tools that the CHSQhas developed over the past fewyears.Colouring booksBrimblehorn continues his travelsas he heads off to to win thehearts of the public. Since his“arrival” at the Renaud Braystores, and thanks to a targetedpress campaign, Brimblehorn hasappeared in Le Devoir, on thepetitmonde.com website, onRadio-Canada shows (Droit auCoeur and Coup de Pouce), aswell as on community radiostations.We hope to extend thedistribution of Brimblehorn in2006 thanks to new agreements

with chain stores.Despite this public success, wemustn't lose sight ofBrimblehorn'sfamily rootswhich includeyou, thanks toyour salesnetworks. Thenumber ofsales bymembers hasgone downthis year, sowe're counting on each and everyone of you to reverse this trend.

DonationsOur entire membership, bothmembers and partners, weresolicited by mail at the beginningof November and we're happy toannounce that we have alreadyreceived over $1000, with manynew donors replying quickly.The campaign isn't over yet andyou still have time to send in yourdonations. Thank you all!

Bowl-a-thonIn light of the success of the 2005Bowl-a-thon, we're happy toannounce that the second editionwill be taking place in Montrealon April 30 and in Quebec City onMay 6. Our objective this year is$10,500.Mark these dates on your agendaand get back in touch with yourchildhood friends; we need all thehelp we can get to sell tickets! §

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

of these pharmaceutical companies:Baxter, Bayer, Novo Nordisk, Wyeth and ZLB Behring

byFlorence BourdeauProgram andFundraisingCoordinator