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OCTOBER 2011VOLUME 19, NUMBER 3
Three delegates from the QuebecChapter travelled to Tunisia inDecember 2010 for the final activityin our WFH twinning partnership.Workshops dealt with strategicplanning and good governancepractices. L'Association tunisiennedes hémophiles (ATH) immediatelybegan working on restructuring theirorganisation, creating a MedicalCommittee and a Patient OutreachCommittee to contact new familiesand recruit new volunteers.However, soon after, there waspolitical upheaval in Tunisia, whichsparked the Jasmine revolution,spreading throughout the MiddleEast. Recently acquired prophylactictreatment was halted due to theuncertainty of replenishing existingstocks in the near future because ofongoing changes in the government.On-demand treatment was availableonly at the treatment centre wherepatients and parents, along withtheir children, had to pass throughthrongs of demonstrators in thesquare beside the hospital to get tothe clinic. Thankfully, prophylactictreatment was reinstated in May inTunis and in some large centres.Work on the strategic plandeveloped with ATH in Decemberhas been put on hold until the
situation stabilizes. Yet despite theupheaval, volunteers from ATH havecontinued their work. They'veorganised parent workshops inTunis, held two blood donor clinicsfor World Hemophilia Day withinformation kiosks in Tunis andSousse and were interviewed for anarticle that appeared in a localhealth magazine. ATH was alsoinvolved in blood donor clinics forInternational Blood Donor Day inJune.
Tunisia-Quebec TwinningHonouredWe are proud to announce that theTunisia-Quebec twins have beenawarded the WFH OrganisationalTwin of the Year Award for 2010.This award is given in recognitionof the hard work and dedication ofall participants, patients and medicalpersonnel, involved in thissuccessful twinning project. It willbe presented at the WFH congressto be held in July 2012 in Paris.Congratulations and thanks go to
everyone involved, as well as toCHSQ members for supporting thisimportant program.Over the past five years, advances totreatment and care for people withbleeding disorders in Tunisia hasbeen remarkable, thanks in large partto the dedication, hard work andgenerosity of the Tunisian volunteers,both patients and medical personnel.We are certain that the work begunin 2010 will move forward once thesituation in Tunisia stabilizes.The courage, strength andcompassion we've found in ourTunisian partners can be summed upin something Amel Raissi, ATHtreasurer and mother of two sonswith hemophilia, wrote to us:“Treatment exists, but we still have alot of work to do, especially in thesouthern regions of our country, notonly to preserve what we've acquired,but also help improve the situation forall patients and ensure the continuityof care in order to attain our objective:Treatment for All!!!” §
CHSQ-ATH TWINS AWARDED TWIN OF THE YEAR AWARD FOR 2010
byPatricia Stewart
ATH and CHSQ
members during
their visit to Tunis
in December 2010
(from left to right):
François Laroche,
Iyadh Assini,
Emna Gouider,
Kaouther Zahra,
David Page,
Taoufik Raissi,
Amdouni Hamma,
Mylene D’Fana et
Amel Raissi.
2
A WORD FROMTHE EDITOR
I was among the roughly 180participants at the 7th WorldFederation of Hemophilia (WFH)Global Forum on the Safety andSupply of Treatment Products forBleeding Disorders held in Montrealon September 22 and 23, 2011. Thisforum, as you will recall, isorganized by the WFH every twoyears, in the year no WorldCongress is held.It's really a mini-congress, withselect speakers from the field ofmedicine as well as representativesof product suppliers, regulators andmanufacturers and people withbleeding disorders. Two very fulldays focused on four themes:Perspectives on risk, Achieving asafe and affordable supply, Noveltechnologies and Manufacturer'supdates.It was very instructive to learnabout recent progress in currentresearch by coagulation productmanufacturers. Several factor VIIIor IX therapies are currently inphase I, II or even III trials fordevelopment of long-actingproducts, and results are veryencouraging! It will not be longbefore these products will be
available on the market inCanada — some even within thenext two years — whereas forothers, it will be another five yearsor so.One of the presentations thatimpressed me most was definitelythe conference on noveltechnologies in gene therapypresented by Dr. Amit Nathwani. Ina phase I trial, the hemophilia Bgene was delivered to the liverthrough peripheral veinadministration using an inactivatedadeno-associated virus (AAV) capsidas a vector. With a serotype 8 AAV,there is less tendency to stimulatethe immune system, a safer optionimmunologically in the long term.Though only six patients with severehemophilia were included in thetrial, early results are very promisingbecause factor IX levels increasedsignificantly several weeks after thegene transfer in all patients, risingfrom 1% to as much as 12% ofnormal depending on the dose ofthe vector administered —withlarger doses yielding higher levelsof stabilized factor IX. Two patientswere able to extend the intervalbetween prophylactic doses andfour were able to discontinueprophylactic therapy completely!This clinical trial, conducted in theUnited Kingdom, is currentlyrecruiting participants around theworld for phases II and III of thestudy. §
SUMMARY
EDITORIALSTAFFEditor:François LarocheContributors:Geneviève BeauregardSébastien BédardEmily BlanchetteChantal ChampouxLisa-Marie MathieuMarie-Ève-MessierCatherine SabourinPatrick SyrianiPatricia StewartCharles VanasseProofreaders:Joyce ArgallGeneviève Beauregard Charles VanassePage layout:François LarocheTranslation:Rita CloghesyPatricia Stewart
CHSQ-ATH Twins AwardedTwin of the Year Awardfor 2010 1
A Word from the Editor 2
Editorial 3A great challenge, a stimulatingenvironment
CHSQ Activities 4
Second RegionalFrancophone Workshopon Rare Bleeding Disorders 5Held in Montreal from April 29to May 1, 2011
Hemophilia TreatmentCentres’ Corner 6 & 7The Challenges of HomeInfusion for young childrenwith severe hemophilia
Fundraising 8
Parents’ Corner 9How lucky we are to live inCanada for factor concentratesavailibility
Inhibitors’ Corner 10A Victory against Inhibitors
Rendez-vous 2011 inCalgary 11 & 12CHS Medical Symposiumand Members' Workshops
In a Word 12
byFrançois Laroche
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, 1102-2120, Sherbrooke Street EastMontreal, Quebec H2K 1C3Telephone: 514-848-0666 or 1-877-870-0666Fax: 514-904-2253or by e-mail to the followingaddress: [email protected]: www.hemophilia.ca
• L’Écho du facteur is a newsletter producedby the Quebec Chapter of the CanadianHemophilia Society and is distributed threetimes a year to its members.Circulation: 250 in French, 100 in EnglishLegal deposit: Bibliothèque nationale duQuébec, 2011.
3
EDITORIAL
participants and is up-to-date onthe most recent ideas in order toconstantly improve the serviceswe offer to members. With this inmind, we invite you to visit ourwebsite regularly in order to getall the details about our ongoingactivities.
An organization that servesits members and thoseaffected by an inheritedbleeding disorderTo be able to offer annualprogramsaccessible to allpeople affectedby these raredisorders, theCHSQ isincreasing itsvisibility inorder to recruita largernumber of newmembers. TheCHSQ does nothave amembership fee but joining offersyou a number of advantages. Asexecutive director of ourorganisation, my mission over thenext few months will be to initiatea recruitment campaign that willenable the CHSQ to increase itsmembership.
Another priority for the executivedirector is the funding aspect ofour organization. Our financialsituation is healthy and we counton the support of our numerousdonors to achieve ourmission.However, in order to let us furtherdevelop the services we offer, it
I’m very pleased to join theCanadian Hemophilia SocietyQuebec Chapter (CHSQ) as theirnew Executive Director. In thisposition since July, I'mbeginning to fully participate inmanaging our organisation andI've already noticed how muchthe people who work to fulfillourmission do it with conviction,passion and a deep sense ofhuman solidarity. A reassuringenvironment composed ofpeople who truly want to offereveryone suffering withhemophilia or other inheritedbleeding disorders all thesupport they need to live withthese rare diseases.
I'm particularly proud to helpin fulfilling this mission and Ihope that my input over the nextyears will help the CHSQdevelop and prosper for thebenefit of all its members.
Quality supportThe CHSQ offers those affectedby an inheritedbleeding disorderand their families care andsupport services tailored to meettheir needs. The members valueour present programs and we'reconstantly looking to improveitheir quality and accessibility.Our program coordinator,Geneviève Beauregard, trulylistens to the feedback from
is essential to develop anddiversify our funding base.
We hope to create a Council ofAmbassadors whose mandatewill be to develop and initiatenew funding activities. TheCHSQ already counts on a strong philanthropic tradition and itsfinancial base is solid. Increasingour revenues will only help usto accomplish even more!
A daily collaborationWe're happy to be able to counton the collaboration of a numberof partners in the elaboration ofour activities. The national officeof the Canadian HemophiliaSociety as well as the WorldFederation ofHemophilia supportus in the daily management ofour work and sharewith us theirknowledge, skills and expertise.
We also count on the support oftheQuebec Healthpartnersorganization, of which we areone of the 16 founding members,for fundraising, the promotionof our organisation and thetraining of our spokespersons.
Finally, we actively maintainclose ties with the HemophiliaTreatment Centres in Quebec,so that they can share, evenmore efficiently, informationfrom the Canadian HemophiliaSociety - Quebec Chapter withtheir patients..
I hope all L'Écho du facteurreaders will keep abreast andtake full advantage of all theactivities organised by theCHSQ. §
A great challenge, a stimulatingenvironment
Another
priority for the
executive
director is the
funding aspect
of our
organization.
byCharles VanasseExecutive Director
4
15 enjoyed a week of fun filledmoments. Despite the rain, the weekwas action packed. Amongst theactivities, a cinematographicworkshop took place and each groupmanaged to produce a short film thatthey took home with them.During the week, sessions for learningabout bleeding disorders, theimportance of self-infusion and howthe coagulation cascade functionswere given by our two nurses. Wecan assure you that those little eyeswere all focussed on the presentersand their little ears were attentive.Each morning, seeing the effort andsuccess of all the youngsters duringthe self-infusion sessions is alwaysa proud moment and provides visualproof that this is what camp ia allabout.I'd like to take a moment to thankMaxime Lacasse Germain who didan incredible job as our camp director,to Emily Blanchette and GenevièveLeduc, our two assistant counsellors,who devoted themselves to helpingthis camp run smoothly. We mustn'tforget to thank the support offeredby our pharmaceutical partners, theFrançois-Bourgeois Foundation andOpération Enfant Soleil.
CHSQ ACTIVITIES
Past Activities
CHSQ Summer Camp
Where are all the colours gone...?Trying to find out who stole thecolours from nature...is how the 40th
CHSQ summer camp began.
This year, 29 youngsters, our biggestgroup so far, got the opportunity toattend camp, thanks to the supportof our financial partners, thepharmaceutical industry, the François-Bourgeois Foundation and OpérationEnfant Soleil, who funded ourcinematography workshop.Youngsters between the ages of 5 and
byGeneviève BeauregardProgramCoordinator
And yes, the fairies finally found outwho stole nature's colours andmanaged to keep all the youngstersfilled with wonder, right up to the finalmoment!The 40th edition of camp went so wellthat we realize, by reading theevaluation forms, that this activityevolves from one year to the next andthe youngsters are proud to be partof the 'Hemophilia' group!Let's continue to make this camp anessential activity that createsrelationships that last for a long time.See you next year.
Youth activityDue to a poor registration, the youthactivity was cancelled. An evaluationwill take place to decide on the bestway to keep in touch and thepertinence of this activity.
Upcoming Activities
ScholarshipsDon't forget! Every year the CHSQoffers three people the opportunity toget a scholarship. There are twocategories:• The academic scholarship is offeredto a student at the collegial oruniversity level, or anyone registeredin a professional course.• The encouragement scholarship isoffered to members with a bleedingdisorder taking a professional upgradecourse in their field or returning toschool, at any level.The goal of the scholarship is toencourage young people with ableeding disorder to continue theircollegial, university or professionalstudies. It's also to encourage peoplewith a bleeding disorder to return toschool or follow a professionalupgrade course.*Deadline for presenting your request:October 21, 2011 at midnight.You can get the form on theorganisation's Internet or else contactthe office to get it by mail.
Autumn camp for youngsterswith inhibitorsFor the first time — a camp specificallydesigned for children with inhibitors!From October 21 to 23 they'll get tomeet for a weekend without their
5
parents for an "autumn camp". Duringthis time, parents will get a chanceto relax and participate in workshopsdesigned for them. Information iscoming soon, so check your emails!
Rare bleeding disorderworkshop
From November 25 to 27, there willbe a weekend for people with rarebleeding disorders in Halifax. If you'reinterested in participating, please
contact the office to get theregistration form. The deadline forregistration is October 15, 2011.
Women's groupFor some time now, the carriers'group has been waiting to have itsown activity. We're happy toannounce that this autumn, aweekend will be held for you.Workshops, relaxation and sharingwill be on the agenda.
CHSQ ACTIVITIES (cont’d)
SECOND REGIONAL FRANCOPHONE WORKSHOPON RARE BLEEDING DISORDERS
Held in Montreal from April 29 to May 1, 2011our diseases. The doctors were verygenerous with their time. Participantsgot to attend other very interestingconferences that were wellappreciated including: An overview ofhemostasis and bleeding disorders,Treatment for bleeds and medicalprocedures, A healthy spirit in a healthybody, Relaxation techniques, Rarebleeding disorder register, Navigatingthe ER, and Bon voyage! Travelling witha bleeding disorder.Expectations were certainly high afterthe first workshop, but I believe theywill be even higher for the next one —as the 2011 workshop was aresounding success on every level.The evaluations completed by theparticipants were very positive.Everyone seems to have greatlyenjoyed the weekend.Once again, I would like to thank oursponsor, Novo Nordisk, the organizers,the speakers and the participants, whomade this event such a huge success.I hope to get another chance to relivethis experience. Thank you! §
The second regional workshop onRare Bleeding Disorders Through theLifespan was held in Montreal fromApril 29 to May 1, 2011. Some twentypeople with rare bleeding disordersor parents of children with suchdisorders took part in the workshop.For some participants, myselfincluded, this was our secondworkshop. The first workshop weattended, in the fall of 2008, was areal life-changing experience. Thatfirst workshop was, for many of us,our first introduction to the CanadianHemophilia Society community. As aresult, we had been hoping since thattime that other workshops would beorganized so we could relive thoseinspiring moments.A great deal of work is required toprepare events such as these. I waspart of the Planning Committeeformed several months before thedate of the workshop, and conferencecalls were arranged to work on theorganization of the workshop. I wouldlike to thank all the members of thecommittee for their excellent work:Claudine Amesse, RN, GenevièveBeauregard, Clare Cecchini, Beverly
Dawson, Mylene D'Fana andDr. Rochelle Winikoff.Throughout the workshop, we weremost fortunate to hear fromexceptional speakers who gave sogenerously of their time in preparingand presenting their sessions.I took part in the group presentationon Friday evening when participantsshared some of their life experiences.This was one of the rare moments inmy life that I opened my heart toothers, others like myself.Presentations like these help peoplerealize they are not alone in whatthey face on a daily basis — socomforting for those of us living witha rare bleeding disorder, as we almostnever have an opportunity to shareour thoughts with others likeourselves. Based on the workshopevaluations and comments received,the simple fact of getting to know andbeing able to talk to others livingsimilar situations was one of thehighlights of this workshop.The entire weekend was very
Check your emails, the informationwill be available soon.
Family weekendThe flagship activity of the CHSQ ismoving! From March 16 to 18, 2012,the "Rencontre CHSQ" familyweekend will be held at the Aubergela Jouvence in the Orford area.A new location, a new concept.You'll receive more informationshortly. §
bySébastien Bédard
instructive.I especiallyliked theround tablediscussionswith thehematologists,whereparticipantshad a chanceto speak tothose rarespecialistswho reallyunderstand
6
Since initiating thepsychoeducational approach atthe Montreal Children's HospitalHTC, there have been far fewertears than many more smiles!
Catherine Sabourin
***
Thanks to four adorable, strongand resilient little boys, ranging inage from just a few days to threeyears at the time of their diagnosisof severe hemophilia, and theirsupportive parents, we developedthe psychoeducational approachto help young children cope withhemophilia. The approach is partof the Child Life model (1) and isfounded on our knowledge ofchildhood development in thefamily and cultural context andthe impact that the illness andmedical treatment has on thechild's sense of equilibrium.Everyone at our HTC is dedicatedto guiding little ones and theirfamilies to live with hemophiliaand find a new balance in theirlives.
Tools for parents of a childwith hemophiliaThe first step, of course, is toabsorb theshock of thediagnosisand all theinformationthat willneed to beassimilatedin order toadapt to thisnew reality.The HTCprovides acollection ofbasicresourcesand asupport network to guide youalong the way.Past experience has shown thatone of the greatest challenges atthis early stage is making full useof these resources and accepting
For almost seven years, I havehad the pleasure, as a nurse in theIntensive Ambulatory Care Serviceof the Montreal Children'sHospital, of collaborating withChantal Champoux, a certifiedchild life specialist.Living with a chronic disease isnever easy, especially for a youngchild with severe hemophilia whomust learn to cope with frequentinjections. Chantal works with themedical team and families to helplittle ones through the adjustmentperiod. This begins withacclimatizing the child to themedical environment and creatinga feeling of security through playand trusting relationships withvarious caregivers. Depending onthe child's stage of development,Chantal helps young patientsunderstand what is happening tothem and gives them a strategy toface the challenges of the medicalprocedures and treatments thatthey will need to undergo. Thisgradual process is often filled withmany obstacles for both the childand the family but the processpaves the way to greaterautonomy in managing the child'shemophilia and health.Chantal has been an invaluableally to me, especially when thetime comes for the family and littleone with severe hemophilia tobegin regular factor treatments atthe Hemophilia Treatment Centre(HTC), and later during thetransition to home treatment. Iasked Chantal to share with yousome strategies that can ease thehome infusion process.
HEMOPHILIA TREATMENT CENTRES’ CORNERThe Challenges of Home Infusion
for Young Children with Severe Hemophiliathat your child has hemophiliawithout losing sight that he or sheis, first and foremost, a child. Ioften remind myself of thefollowing thought expressed bythe parents who collaborated onthe excellent resource All AboutHemophilia: A Guide for Families:“…parents who deal withhemophilia in a positive way willhelp their child do the same.” (2)The best tool you have is yourunderstanding of your little one,his or her temperament and abilityto adapt. As parents you are theexperts when it comes to knowingyour child.
Preparing your child forhome infusionJust as important as being taughthow to administer the procedureat the HTC is spending timepreparing your child for homeinfusion. This will determine howwell he or she copes with theexperience. The first key to successis establishing a routine in the HTCthat can be easily transferred tothe home. Choosing the words youuse when talking to your childabout hemophilia and treatmentis important because theseelements will be an intrinsic partof your child's life from now on.At the Montreal Children'sHospital, for example, we talkabout Factor VIII or IX or treatmentrather than about the needle ortourniquet used to raise a vein.The story of Bob the Puppet hasbeen helpful in demystifying theexperience for pre-schoolers. Playremains the preferred way toaccess a child's world and can helplittle ones become familiar withmedical equipment and treatment.A medical play kit that includes atourniquet, syringe, butterflyneedle with the needle removed,alcohol swabs and gauzes, anempty bottle of factor in itscontainer, and adhesive bandagesdecorated with cartoon characters,
Everyone at our
HTC is dedicated
to guiding little
ones and their
families to live
with hemophilia
and find a new
balance in their
lives.
byCatherine SabourinNurse Coordinator
andChantal ChampouxCertified Child Life SpecialistHemopphilia Treatment CentreMUHC Montreal Children’s Hospital
7
such as Spiderman, is a great placeto start. All that's missing is thepatient, which can be a stuffedanimal, a dinosaur or any othertoy the child chooses.For older children, washablemuslin dolls, called ShadowBuddies (3), can be personalizedby drawing a face on them withwashable markers.Apart from a routine that helpschildren predict and relate to whatwill happen, there are strategiesto support and comfort little onesduring infusion. You will need toexperiment a little and vary thestrategies since every child isdifferent and constantly evolving.Distraction works especially wellat this age because young childrenare intensely curious. At the HTC,we have had a lot of success withDVDs and music clips or gamesuploaded to a cell phone that weset up while the treatment is beingprepared. Reading a fairytale orhaving a favourite toy or stuffedanimal to hold also works well.One person should be solelyresponsible for distracting thechild.Some children need to take partin their treatment and feel incontrol. These children will wantto watch as the treatment is beingprepared or count to three whileenjoying the distraction. Ideallythis process will have begun at theHTC and only be transferred to the
home after several sessions duringwhich both parents and childrenhave acquired the necessaryexperience and skill.
Home infusion brings newchallengesWhether the therapy is on demandor a prophylactic, there are manyadvantages to treating hemophiliaat home.Otherfamilymemberscan betrained toinfuse thechild andsupport youwhenneeded.Catherineand I visitparents thefirst timethe infusionisperformedat home to make the transitionfrom the HTC as smooth aspossible.Below are some of the things thatour families have taught us:• Infusions are necessary and non-negotiable. This is a golden rulethat the child will come tounderstand and accept.• A routine puts the child more atease. Choose a location in thehouse where the infusion will
always be administered at aroundthe same time of day. Avoid thebedroom, which should remain aquiet place to sleep.• Set a routine similar to that ofthe HTC, including doing a littlepreparation, putting on a DVD orusing another distraction strategy.• Allow the child to take part inthe process by choosing the movieor holding the alcohol swab, forexample.• Stay calm and confident even ifthe vein does not cooperate thefirst time. Your emotions play akey role in influencing your child'sbehaviour and perception of thetreatment.The MCH team is always here toassist you. We can put you in touchwith other parents who alsoadminister home infusion. As yourchild grows older, he or she willprobably want to assume greaterresponsibility for treatment, sostrategies will change. We hopethat found our experience andchallenges helpful. §References:(1) www.childlife.org(2) All About Hemophilia: A Guide forFamilies, Canadian Hemophilia Society.(3) www.shadowbuddies.org• Les grands besoins des tout-petits,G. Duclos, D. Laporte, J. Ross, ÉditionsEnfants Québec.• Yoyo - Moi aussi je suis capable !M.-F. Hébert, Éditions Dominique etCompagnie.
A MOMENT TO REFLECT
“A printer is a person who doesn't lack character and whoaims to make a good impression.”
Serge Mirjean
As your childgrows older, he
or she willprobably want
to assumegreater
responsibilityfor treatment, sostrategies will
change.
HEMOPHILIA TREATMENT CENTRES’ CORNER (cont’d)
8
Bowl-o-thon
There have already been fourBowl-o-thons since the beginningof the year and almost $13,850raised.On October 30, 2011, the QuebecCity area will hold the final Bowl-o-thon of the year. Lisa-MarieMathieu, who's responsible forthis Bowl-o-thon, invites you tojoin her starting at 1:00 p.m. atthe Élite de Saint-Georgesbowling alley. There are twostarting times: the first at 1:00 p.m.and the other at 3:00 p.m.For more information or tickets,contact Geneviève Beauregard at1-877-870-0666, or by email [email protected].
Dance for Life
In order to highlight the 5th Editionof Dance for Life, the benefit showis expanding and moving to theGesù, in the heart of the Quartierdes Spectacles in Montreal.Once again, the evening will bea colourful one. Reserve the date,November 12, and comecelebrate the wonder of life!The Internet site will be updatedsoon : www.danserpourlavie.ca.Don't hesitate to share this withyour contacts, your friends andyour family!
New Blood CampaignThe end of the year isapproaching and once again, weare asking for your generosity inorder to carry out the CHSQmission. The 2011 New BloodCampaign will be launchedtowards the end of November.Check your mailbox.Once again this year, you'll beable to make your monthlydonation by credit card. Thankyou for supporting the mission ofour organization.§
FUNDRAISING
byGeneviève BeauregardProgramCoordinator
C H S Q
Healthpartners-Quebecand the 2011 Entraidefundraising campaign
The Canadian HemophiliaSociety - Quebec Chapter isproud to be associated withHealthpartners - Quebec (of whichit is one of the 16 foundingmembers) for the launch of the2011 Entraide Campaign.This charitable campaign is aimedat government employees andlarge Quebec corporations,allowing Healthpartners-Quebecto raise over two million dollarseach year. These funds are thendivided amongst the 16organizations that make up thisgroup.Healthpartners - Quebec is theresult of the consultation andcollaboration of 16 organizationsworking in public health in allareas of Quebec in order to pooltheir fundraising efforts. Thefounding organizations continueto fight against 300 healthproblems that affect more thantwo million Quebecers.2011 Entraide campaignBecome a spokesperson forHealthpartners-Quebec andrepresent the CanadianHemophilia Society - QuebecChapter to take an active part inthe 2011 Entraide Campaign bymeeting government employeesand giving a personal testimonyabout how hemophilia affects yourlife. Contact the CHSQ if you'reinterested. Tell your contacts and, inparticular, your friends who workfor the government, and informthem of the importance of theircontribution and about thepossibility of specificallydesignating the CHSQ as arecipient of their contribution.See the Entraide 2011 campaignWeb site as well as Healthpartners-Quebec to learn more about theseinitiatives and invite your contactsto do the same. It's for a goodcause! §• www.entraide.gouv.qc.ca• www.partenairesante.qc.ca
- C.V.
At the April 27 pressconference held in theauditorium of the Centrehospitalier de l’UniversitéLaval (CHUL — LavalUniversity Hospital),CHSQ President FrançoisLaroche received a “sun”valued at $2,759 fromJosée Lavigueur, one of thespokespersons forOpération Enfant Soleil.This money was used tobuy video material for the2011 summer camp.Thank you to OpérationEnfant Soleil for itsgenerosity!
9
As for co-pays, some insurancesdon't charge any and some chargeup to $10 to $20 for regular doctor'svisits and $50 to $75 per visit foremergency room visits or visits witha specialist. Medication like factoralso has a co-pay, usually the same80% / 20% split as mentioned earlier.(Note that the cost of factor, evenwhen paying only 20%, is still veryelevated).
People who work for the military orthe government pay nothing formedical care, but are directed to thenearest military base for treatmentand if there is no military base withina certain amount of kilometers, theymay go anywhere for treatment.
This is my experience, it may bedifferent for others but this is whata typical situation resembles. ”
In the end, these stories made myblood run cold. I wondered whatwe'd do if we ever lost ourgovernment program that suppliesthe factor that we give ourchildren.
Now I understand the importanceof using product in an intelligentand responsible way and teachingour children to do the same thing.We must never rest on our laurelsand take them as a given. We mustcontinually be vigilant so that ourchildren can benefit fromtreatment, without having to facefinancial ruin, like many familiesexperience south of the border.
I only chose two of the answersamong all those I received, butbelieve me, many situationsbrought tears to your eyes. It's atouching topic, that makes youthink.
On this note, I wish you a lovelyautumn in all its glory andprecious moments with yourfamily. §
PARENTS’ CORNER
Hello everyone!I hope you had a great summer,that you're well rested and back-to-school wasn't too difficult foryou and your kids! As for us, itwent well, without any glitchesfor the moment. Over time, stresslevels lessen a bit, I think...As I've already mentioned in aprevious column, I'm part of atwo great groups on Facebookthat allow me to keep in touchwith other hemophilia familiesaround the world, but in particularin the United States.Recently, I did a little survey withmy contacts in the States to findout what their situation is inrelation to hemophilia and thecosts associated with factorconcentrates, since they aren'tcovered by a special program likein Canada (Editor’s note: wherefactor is distributed free of chargevia Héma-Québec or CanadianBlood Services).I was very surprised by thenumber of replies I got, as wellas by the diversity of answers.It seems that each person has adifferent situation, depending ona number of factors such as theiremployer, their marital situation,their age, etc.So I decided to share some ofthese answers, and believe me, Irealized how lucky we are inCanada...Here's the story of one familywho's mother doesn't work and
who is eligible for Medicaid, theprogram that covers expenses forlow-income families.“ Our income is low enough so wecan get Medicaid for our son.Money is so tight right now, and Iam so thankful for Medicaid. Wedo not pay for anything, they covereverything. Our son is onprophylaxis 3 times a week and wehave no problems getting all weneed from our pharmacy. I knowthat the time will come when wewill have to be covered by privateinsurance, and I hope it's as easyto get factor as it is now. ”And finally, a mother who kindlyresumed a number of differentsituations that can happen andthat she personally experienced:“ It is very complicated to discussinsurance because it's alwaysdifferent, depending on yoursituation. Customarily, if you havea job thatoffersinsurance,you chooseyour planfrom about 3or 4 choices. There is adeductiblethat youmust meetbefore fullcoveragebegins.Usually, thedeductible isaround$1,000 to$3,000 perperson and$4,000 to$5,000 for afamily, peryear. Thismeans thatonce you've attained that amount,it's an 80% / 20% share betweenyou and the insurance company.
byLisa-Marie Mathieu
How lucky we are to live in Canada forthe availibility of factor concentrates
Now I
understand the
importance of
using product in
an intelligent
and responsible
way and
teaching our
children to do
the same thing.
We must never
rest on our
laurels and take
them as a given.
10
INHIBITORS’ CORNER
Hello everyone,Our son has severe Type A hemophilia anddeveloped inhibitors when he was about twoyears old.I remember the moment we learned that ourson had hemophilia…but I remember evenmore vividly the moment we learned that hislife would be even more complicated with thearrival of inhibitors.The sky that was just getting brighter seemedsuddenly to turn very, very dark. And themountain that we seemed to be steadilyclimbing suddenly become steeper and morechallenging.The first years were the most difficult: jointbleeds, muscle bleeds and so many mouthbleeds. Oh my God! I had the impression itwould never end…but I also hoped that oneday, the winds would shift.Starting school went well. Marc-Antoine waslucky to be surrounded by amazing people.The person who accompanied him, Linda, tookcare of him as if he were her own son.Moreover, we're convinced that this womanhas been of utmost importance for this success.The slightest change in his gait, and she noticedit. She saw everything, even before Marc-Antoine complained about anything. Anincredible woman!!!Five years later, the hours for an adult assistantwere cut back, so as to bring Marc-Antoinetowards independence. He's now in 5th grade,and soon it will be high school and we knowhe has to be prepared for it.Strangely enough, this life stage that we weredesperately afraid of has suddenly been simplifybecause yesterday, our life changed…we gotsome marvellous news!A voice filled with emotion left the mostwonderful message on our answering machine.It was the voice of our dear nurse, Claude, whoannounced a great victory…After eight years of immune tolerancetreatment, our beautiful son finally made it!!!The magic number of 0 finally appeared afterhis last inhibitor assay results.I can't describe the joy we felt at that moment,as well as the excitement and pride in the eyesof our dear son. Pride for having won the battle.
Even though we're well aware that all our son's desireto achieve it and all the hope that we had really madeno difference, we're very thankful to life and medicaltreatments for the opportunity he's been given.Since families of children with hemophilia who'vedeveloped inhibitors are very few, it's impossible for usnot to think about them. Our hearts go out to them, evenmore so since all the boys are about the same age.They're all incredible, each and every one of them, andI wish with all my heart that they'll have the same luckone day.We're convinced that life will be easier from now on,but in the meantime, everything is new. We celebratethis victory one day at a time, learning to live withoutinhibitors. But with the wisdom of a ten-year-old, Marc-Antoine has clearly understood…As for us, it's a wholeway of thinking that will have to change, but that's onlya minor detail.A big kiss to all our hemophilia families living withinhibitors. We love you. §
A Victory against InhibitorsbyMarie-Ève [email protected]
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RENDEZ-VOUS 2011 in CALGARYCHS Medical Symposium and Members' Workshops
On May 26-29, 2011, the CanadianHemophilia Society (CHS) hosted amedical and scientific symposium,which featured sessions on rarebleeding disorders, mild hemophiliaand aging with a bleeding disorder, aswell as a youth workshop entitled,Drive Your Car/Drive Your Care. TheCHS took advantage of the occasionto hold its Annual General Meetingand to present its national recognitionawards.The CHSQ was proud to witness therecognition given by national to thework of two of its representatives anda health care professional who werenominated by the chapter.CHSQ Program Coordinator GenevièveBeauregard was honoured with thePierre Latreille Award presented toa staff member who has demonstratedskills, dedication and accomplishmentsbeyond the normal duties of anemployee.Maxime Lacasse Germain, a memberof CHSQ's Board of Directors and atireless worker on behalf of youth, washonoured with the ExceptionalService Award presented to anindividual who has been associatedwith the organization for less than fiveyears and who has made a significantcontribution to the growth anddevelopment of its mission at thenational level.Suzanne Douesnard, at psychologistat Sainte-Justine Hospital's HemophiliaTreatment Centre, was honoured withthe Award of Appreciation for heroutstanding service to the hemophiliacommunity for 30 years.Congratulations to these threedeserving recipients!
- F.L.
Last May, I got to attend the bi-annualCHS conference called Rendez-vousCalgary. I went as a recipient of thePierre Latreille Award, given toemployees who offer outstandingservice and who have been on the jobfor more than five years. I also tookpart in various training workshops,from which I gleaned a lot ofinformation and knowledge that isalready useful in my work.What touched me the most during thisRendez-vous was how our hemophiliacommunity is aging. I'm very happy tolearn that the life expectancy of peoplewith a bleeding disorder is much betterthan before.I realize there's a lot of work to do tohelp people suffering with a bleedingdisorder who live in developingcountries. What we learn here abouthow aging with these disorders will nodoubt help with the efforts we areundertaking to help the internationalbleeding community.I also really appreciated the workshopsdealing with physiotherapy. And Iunderstand the importance that mustbe given to the health of joints inpreparation for a better quality of lifefor people living with hemophilia. Adiscipline that hemophiliacs shouldadopt at a very young age.The Calgary Rendez-vous showed thegreat complicity amongst the diffferentcaretakers involved in hemophilia. It'sremarkable to see doctors, nurses,physiotherapists, social workers andpsychologists all working together forthe single purpose of helping thosesuffering with a bleeding disorder.The hemophilia community is a greatfamily and I'm happy to have been partof it for almost eight years now. I'd liketo thank the CHSQ Board of Directorsfor having given me this lovely tokenof appreciation in recognition for mywork.As I said during the awards ceremonyin Calgary: "I don't think of my workas a job, but more as a way to bringsomething better to your lives andmine."I'm looking forward to seeing all of youduring a future activity.
Geneviève Beauregard
***I really appreciated my experienceduring this weekend. My youngerbrother has hemophilia and I find itvery interesting to meet people living
with a bleeding disorder like his and tohear their viewpoint about their disease.I also took part in a number ofworkshops and two in particular caughtmy attention.First of all, I really enjoyed attendingthe medical symposium. At first, I mustadmit, I didn't understand anythingabout what was being said. But as theday went on, things got clearer. Thetopics covered were very varied: agingwith hemophilia, mild hemophilia, andrare bleeding disorders. My favouritepart of the day was probably the paneldiscussion dealing with rare bleedingdisorders, since I learned a lot abouthemophilia and bleeding disorders Ididn't know about.Secondly, I took part in the Drive YourCar / Drive Your Care workshop thatwas organized particularly for the youthgroup. The workshop was co-presentedby a physiotherapist and a formerpoliceman who established a parallelbetween bleeding disorders and drivinga car. As a future driver, I found thesection on driving very useful, since Ilearned a lot of things that I hadn'tlearned in my classes. I also liked thepart about bleeding disorders becausewe discussed antibiotics to take or avoidand some of their side effects. It alsoincreased our knowledge aboutbleeding disorders by playing anadapted version of Who wants to be amillionaire?Finally, I'd like to thank the CHSQ forhaving given me this opportunity. I'mvery happy that I attended Rendez-vous2011 and that I learned a lot more aboutmy brother's disease.
Emily Blanchette
cont’d on page 12: Rendez-vous >
Geneviève Beauregard receiving the Pierre LatreilleAward from David Pouliot.
Maxime Lacasse Germain receiving theExceptional Service Award (national level)from Hélène Bourgaize.
The final session on mild hemophiliacaught my attention by the way thetopic was presented. In fact, I learnedthat mild hemophilia mustn't betaken lightly! While mildhemophiliacs have a greater potentialfor healthy joints, they still have atendency to bleed and they rarely useconcentrates.The next day, I took part in the DriveYour Car / Drive Your Care workshopthat dealt with various treatmentsfor pain, depending on its intensity,and road safety. It was a veryinteresting workshop that allowedme to meet many new young peoplefrom the community.Rendez-vous Calgary gave me theopportunity to meet many people,both professionals and volunteers,involved in the CHS. I even took thisopportunity to visit Banff NationalPark with other participants! §
Patrick Syriani
New publicationsThe Canadian Hemophilia Society(CHS) recently launched several newpublications that may be of specialinterest to you.The first document, entitled Federaland Provincial Support Programs,outlines various types of supportavailable to persons with physicaldisabilities. The programs describedprimarily target people with a disability.Three other publications deal withinsurance. Individual InsuranceCoverage provides a range of adviceon choosing and obtaining personalinsurance coverage. Travel InsuranceCoverage outlines the variousprotections offered by private travelinsurance plans and the coverageprovided during short-term traveloutside your province of residence.This document ends with a series ofpractical tips for travellers. ProvincialDrug Insurance examines thedifferences between the variousprovincial plans and the repercussionsthat these differences have for theproducts most commonly used byindividuals with bleeding disorders.All four documents are available inPDF format on the CHS Web sitewww.hemophilia.ca. Click on Supportand Education in the left-hand menu.A fifth document, CompensationPrograms for Individuals with HIV orHepatitis C, provides an extensive andclearly outlined list of the federal,provincial, territorial and CanadianRed Cross compensation programsavailable to victims of the TaintedBlood Tragedy.This document is also available in PDFformat on the CSH Web sitewww.hemophilia.ca. Click onHCV/HIV on the left-hand menu. §
- F.L.
IN A WORD
Having attended Rendez-vousQuebec and the one in Ottawa, goingto Rendez-vous Calgary was a no-brainer. I absolutely wanted to bethere.As a member of the National YouthCommittee, it's important for me tolearn as much as possible about topicsnot necessarily related to severehemophilia A, the type that I have.And Rendez-vous 2011 definitelyoffered this. The themes of the medicaland scientific symposium didn'tconcern me directly, but they werevery interesting.The session on aging allowed me tounderstand that when you get older,care isn't as simple as for young peoplewith a bleeding disorder. Advances inresearch show that doctors are takingthis subject to heart.As for rare bleeding disorders,presenters shared their experiencesand it was very educational. Whatmade this session even more enrichingwas the reactions of the professionals,who were very interested by thecontent of these testimonies.
RENDEZ-VOUS (page 1 cont’d)
The publication of this newsletter has been madepossible thanks to the financial contribution of
these pharmaceutical companies:
