april 17: world hemophilia day · focus on hepatitis c 10 scientists closing in on hepatitis c...
TRANSCRIPT
SUMMER 2008VOLUME 16, NUMBER 2
APRIL 17: WORLD HEMOPHILIA DAY
April 17, and will soon be availableon the CHS website.We'd like to thank everyone whotook part and made this showpossible: Dr. Molly Warner, Chief ofHematology at the McGill UniversityCentre, Claude Meilleur, Nurse
A number of awareness activitiestook place to highlight WorldHemophilia Day in Montreal andQuebec City.In collaboration with the Nationalsection of our organization, theCanadian Hemophilia Society (CHS),and the World Federation ofHemophilia (WFH) we're pleased tohave enthusiastically combine ourefforts to share an information kioskat Montreal's Central Station.Employees and volunteers from thethree groups were there to meetpassersby and distribute material,raise funds and answer questions.We sincerely hope to renew this firstcollaborative effort for future WorldHemophilia Days.Elsewhere, the CHSQ set up aninformation table at Saint Justine'sHospital, while in the QuebecNational Assembly, another tablewas set up and pins highlighting theday were given to all deputies. TheMinister of Health and SocialServices, Mr. Philippe Couillard, putforward a motion to recognize thisDay.And finally, a radio show dealingwith hemophilia and involvingresource people from the CHSQ, CHSand medical personnel aired on
byFrançois Laroche
Coordinator at the Quebec ReferenceCentre for Patients with Inhibitors atSt. Justine's Hospital, David Page,CHS Executive Director, DavidPouliot, CHSQ 1st Vice-President, andAline Ostrowski, CHSQ ExecutiveDirector. §
Last April 17, World Hemophilia Day,information tables were set up by volunteers and
employees from the CHSQ, the CHS and the WFHat Montreal Central Station (below) and the
Quebec National Assembly (to the side).
2
A WORD FROMTHE EDITOR
You're holding an issue ofL'Écho de facteur in your handsdedicated primarily to the XXVIIIWorld Federation of HemophiliaInternational Congress that washeld in Turkey from June 1 to 5,2008. On pages 6, 7 & 8, you canread some of the impressions fromdelegates sent by the CHSQ to thismajor biennial event for theinternational hemophiliacommunity. What's more, theNurses' Corner is also dedicatedto this topic and you canexperience this 'happening'through the photos on page 11.In brief, it was a very goodcongress where you could get alot of information about bleedingdisorders, related problems andmusculoskeletal and psychosocialaspects, while getting the chanceto make new connections orstrengthen old ones. The only sournotes were about the congresscentre itself: cobblestones
surrounded the centre making itdangerous to walk, and the roomswere far from each other, besidesbeing on a number of levels. Notreally an ideal spot for people withreduced mobility.This said, Istanbul struck me as anextraordinary city, teaming withactivity, where culture and historymeet. Today this metropolis of theTurkish Republic, ancientByzantium that becameConstantinople, has in factbelonged to ancient Greece, theRoman Empire, the ByzantineEmpire and the Ottoman Empire.The monuments I saw or visitedduring my short stay wereincredible witness to this history;one only has to think of the Romanaqueduct of Valens, TopkapiPalace, Dolmabahce Palace andSaint Sophia or the Blue Mosque.Personally, I've never seen so manyprecious stones prior to my visitto Topkapi Palace, where manytreasures that belonged to famoussultans from the Ottoman Empireare preserved. It's breathtaking! §
SUMMARY
EDITORIALSTAFFEditor:François LarocheContributors:Mylene D’FanaMichel LongLisa-Marie MathieuClaude Meilleur, inf.Aline OstrowskiDavid PouliotPatricia StewartJoumana YahchouchiProofreaders:Aline OstrowskiPatricia StewartJoumana YahchouchiPage layout:François LarocheTranslation:Patricia Stewart
April 17:World Hemophilia Day 1
A Word from the Editor 2
Editorial 3CHSQ Scholarship Programrevised with the creation ofthree different categories ofscholarships
Fundraising 4
Parents’ Corner 5Starting school for a childwith hemophilia
The XXVIII WFHInternational CongressIstanbul, Turkey 6 - 8Impressions of CHSQdelegates
CHSQ Activities 8
Nurses’ Corner 9World Federation of HemophiliaInternational CongressIstanbul, Turkey,June 1 to 5, 2008
Focus on Hepatitis C 10Scientists closing inon Hepatitis C vaccine
The 2008 World Congressin Pictures 11
In a Word 12
byFrançois Laroche
Your Editor took
advantage of Sunday
morning, before
congress started, to
take a short cruise on
the Bosphorus, the
strait separating
Europe and Asia. I got
to admire the
splendors of Istanbul
from one of the busiest
maritime seaways in
the world…and one of
the most beautiful!
• L’Écho du facteur is a quarterly newsletterproduced by the Quebec Chapter of theCanadian Hemophilia Society and isdistributed to its members.Circulation: 300 in French, 100 in EnglishLegal deposit: Bibliothèque nationale duQuébec, 2008
3
EDITORIAL
We'd bemore thanhappy if thechangesmade to thisprogramstimulateyour interestin applying.The deadlineto receiveapplicationsis fixed forSeptember30, 2008.
Description of the threescholarship programcategories
Academic ScholarshipThis scholarship is for memberswith a bleeding disorder studyingat the collegial or university level,or who are registered in a tradeschool.Two scholarships worth $1250each will be awarded in thiscategory in 2008.
EncouragementScholarshipThis category of scholarship is formembers with a bleeding disorder
In order to offer moreopportunities to the hemophiliacommunity, the CHSQScholarship Program now hasthree distinct categories andwill offer four scholarships eachworth $1250.As you learned through thetestimony of the 2007 recipientthat appeared in the last issueof l'Echo du facteur, thisprogram has a positive impacton the motivation of itsrecipients while at the sametime supporting them financiallyand shows the confidence theCHSQ has in their futures.We encourage people who meetthe admission criteria as definedbelow to contact our office atthe regular coordinates in orderto receive an application form.The CHSQ holds the future andprojects of its members to heart,as well as the health careprofessionals who invest in theirwork every day so thathemophilia isn't an obstacle toliving as normal a life aspossible.
who are following a continuingeducation course in their fieldor who are returning to school,no matter at which level ofscholarity.
One scholarship worth $1250will be awarded in this categoryin 2008.
Scholarship for HealthCare ProfessionalsThis category of scholarship isfor health care professionalsworking in the field ofhemophilia and is to supportcontinuing education coursesthat will have positiveconsequences for people in thebleeding disorders community.
One scholarship worth $1250will be awarded in this categoryin 2008.
Each of these scholarships isoffered in collaboration with apharmaceutical company, thesebeing CSL Behring, Baxter,Wyeth and Novo Nordisk, andwe wish to thank them forhelping to finance part of thisprogram.
Good luck to all applicants. §
byAline Ostrowski
CHSQ Scholarship Program revisedwith the creation of three different
categories of scholarships
The opinions expressed in the various colunms are those of the authors and do not necessarily represent the viewpoint of the CHSQ.To let us know your comments or to give your opinion on any related topics,send your text to the following address:
L'Écho du facteur, CHSQ, 10138 Lajeunesse,Suite 401, Montreal (Quebec) H3L 2E2
telephone: 514 848-0666 or toll free: 1 877 870-0666fax: 514 904-2253or by e-mail to the following address: [email protected] site: www.hemophilia.ca/en/8.5.php
We encouragepeople who meet
the admissioncriteria as
defined below tocontact our office
at the regularcoordinates in
order to receivean application
form.
4
FUNDRAISING
Bowl-a-Thon:Mission accomplished!The 4th Edition of the CHSQ Bowl-a-Thon, which took place inVictoriaville (May 4), Montreal(May 10) and Quebec City (May17), proved to be a great successand allowed us to collect almost$10,000.We'd like to thank every personwho collaborated from near or farin this activity: Nathalie Marteland Lisa-Marie Mathieu,responsible for the Bowl-a-Thonsin Victoriaville and Quebec City,as well as our Montreal organizingcommittee consisting of DavidPouliot, Nayla-Marie Syriani andMylene D'Fana, and of course allthe participants and people whomade donations.We also want to thank everyonewho lent a hand to sell tickets andhelp with logistics: Line Couturier,Céline and Denis Durocher, MariusFoltea, François Gagner, KatiaHuber, Éric L'Hérault, MarietteMontreuil and Francis Rheault.One of the reasons for the successof this edition is, no doubt, thecreation of a new Bowl-a-Thon inVictoriaville, which came aboutdue to the initiative andinvolvement of an active CHSQvolunteer, Nathalie Martel. Wedecided to offer her the chance togive her impressions and - whynot - invite you to organize thisactivity in your area:
“Last year, in May 2007, we droveover 300 km to take part in theMontreal Bowl-a-Thon. In orderto support this event, we got 25people from our family together.On the way home, my husband
and I talked: «Why not organize itin our area, Victoriaville, with ourfamily and friends. I think we couldget a lot of people together…» Sothis year, that's what we did. Idecided to get involved and I'mvery proud of the results we gotfor the first year! During the Bowl-a-thon, there were 96 players; Imanaged to reserve all the lanesin the bowling alley, this being 16in all. We raised $2500. TheSunday of the Bowl-a-thon,Joumana was there to give us ahand. People really enjoyed theevent, and I only got positivecomments. People said they'd beback next year if we held the eventagain. In short, I think that for afirst time activity, it was a success!I'd particularly like to thankJoumana who was a great helporganizing this activity. I learneda lot and let me tell you that witha bit of motivation, anything ispossible. So I'd like to challengeyou for next year: Talk to thepeople around you and attend oneof the Bowl-a-Thons alreadyorganized or else organize yourown. Don't forget it's for a goodcause.”
Nathalie Martel,Dilan's mother
Benefit Dance Show:mark this date in youragenda!Conscious that major fundraisingevents need to be developed toallow us to achieve and evensurpass our financial objectives,the CHSQ is pleased to announceits next benefit show entitledDancing for Life, which will takeplace Saturday, November 1 at theEspace Dell'Arte in Montreal.For this 2nd edition, we widenedthe repertory by proposing amultitude of dance styles,interpreted by high caliber artists:the hot rhythms of Salsa and thecontortions of the exuberantSamba are only a few of the actson our program to date.Besides enjoying the diversity ofpresentations, spectators will beinvited to get out on the dancefloor to stretch their legs or elsetaste one of the many wines orculinary delights that will be offeredonsite.Thanks to the support of aCommittee of Governors, themajority being members of theCHSQ, we hope to maximize theprofits from this event with the saleof tickets for $100 each along withcorporate sponsors.Knowing that together, we canassure the success of this activity,we sincerely hope to be able tocount on your presence for thisevent, one that's sure to becolourful! §
byJoumana Yahchouchi
Program andFundraisingCoordinator
The CHSQ would
like to thank
Nathalie Martel
and her husband,
Francis Rheault,
for organizing the
first Bowl-a-Thon
in Victoriaville
this year. We
hope this
initiative will
inspire others…
5
PARENTS’ CORNERStarting school for a child with hemophilia
You should consider always havinga pager or cell phone on you.One mother suggested asking theteacher and daycare worker toalways write it down if a child fallsor hurts himself (such as bumpinghis head, for instance) in an agendaduring the day so that if the childdevelops a symptom during theevening, you can take it seriouslyand give appropriate treatment ifnecessary.Certain mothers choose to keep areserve of factor and infusionmaterials at school to save timeand to be able to return to work assoon as possible after an infusion.If emergency transportation to ahospital is necessary, it's imperativeto advise the school principal thatyour child must be brought to thehospital where there is a hemophiliatreatment centre, since that iswhere the factor is kept. This willsave time and we know that eachminute counts in the case of a majoraccident. Supplying a list of theHTCs is a good idea, since they canrefer to it in case of need.Finally, one mother mentionedhaving supplied all members ofpersonnel who worked with herson with a plastified lettercontaining all necessaryinformation about hemophilia andthe protocol to follow in case ofinjury. She kindly agreed to sendme this sheet, so if you're interestedin getting a copy, just contact meand I'll send it to you by e-mail.I want to thank the three motherswho gave me these tips. I alreadyfeel better about school startingand I'm a bit less worried. Talkingwith others has allowed me torealize that my worries arecompletely normal and that I'm notthe only one to go through thisexperience.I hope you'll all have a greatsummer and I repeat that if youhave any suggestions or commentsabout the Parents' Corner, don'thesitate to contact me by phone at(418) 849-3292 or by e-mail [email protected]! I'll bepleased to answer you. §
Happy summer, everyone -finally! The sun is shining, the BBQis on the patio, and the pools areopen! After the winter we had, itseems to me we appreciate thewarm weather even more and thefact that we can walk out withoutboots and coats. We're even happyto see the bugs! But all good thingsmust end. At the end of the monthof August, school will be back insession. Ah yes, already.I must admit that I'm not lookingforward to going through this newstage at all (but don't tell my sonbecause he's excited about “ joiningthe world of the big kids”). I'vebeen wracking my brain trying tofigure out how to presenthemophilia to school personnel:you see, I don't want to traumatizethem, but I also don't want totrivialize hemophilia to the pointwhere they won't be vigilant! So Ithought that, considering thenumber of little ones that we meetat Matawinie, I can't be the onlyone going through this.So I sent out an appeal to everyone,in order to profit from otherpeople's experiences who'vealready been through this stageand I'm sharing their replies withyou in this column. I'd like to thankPaulette Rivest, Chantal Roy andIsabelle Hawey who helped mewith my research. Here are theirsuggestions!First of all, everyone agrees thatit's important to notify teachers,principals and those responsiblefor daycare about your child'scondition. A face-to-face meetingis best, and I've heard that there'sa videocassette available at theHTC (see article on page 12) thatwas made specially to explainhemophilia in a school setting. One
mother used it and reallyappreciated it since it presentedpersonal stories from teachers whohad had a child with hemophilia intheir class.Do you tell the kids or not?Opinionsvaried. Somesaid yes, it'simportantsince they'llbe careful andcan notify thesupervisor orteacher ifsomethinghappens tothe child.Others saidno, since thissingles themout from theotherchildren. So,the bestsolution is theone that youchoose andthat yourchild wants. It's important torespect the child: if he doesn't wantto tell his classmates, that's how itshould be, since it's HIS diseaseand HIS school life.If you decide to explain hemophiliato the other children, reading thebook Nicolas has Hemophilia tothem was highly recommended,since it gives a good idea of thedisease, is well presented and easyto read. I used it recently during apresentation on hemophilia in anEarly Childhood Centre in QuebecCity and the 4 and 5 year olds thereenjoyed it.It's also important to reassure theteachers and other personnel thatTHEY WON'T BE BOTHERING YOUand that they MUST contact you ifthey have any doubt or worry or ifsomething happens to your child,no matter how small it seems. Thisway, you'll be advised as soon asthere's a problem and you canmake the decision about whetheror not an infusion is needed.Moreover, always being accessibleis reassuring for school personnel.
byLisa-Marie Mathieu
If emergencytransportation to
a hospital isnecessary, it'simperative to
advise the schoolprincipal that
your child mustbe brought to thehospital where
there is ahemophilia
treatment centre,since that is
where the factoris kept.
6
The World Federation ofHemophilia (WFH) held its 2008Congress from June 1 to 5 inIstanbul, Turkey. The CHSQ sentthree delegates, who agreed toreport their impressions followingtheir participation.
Hemophilia 2008, the XXVIIIInternational Congress of the WFH,set a record for participation withsome 4200 delegates from 113National Member Organizations.It was four busy days during whichI was obviously interested in sessionsdealing with medical questions (newtreatment, gene therapy, inhibitors,pathology…), but also those dealingwith multidisciplinary topics (socialimpact of bleeding disorders,prophylaxis, quality of life, etc.) andmusculoskeletal issues(physiotherapy, surgery…).A number of items caught my eyeand here are a few that I'd like toshare with you.During the opening plenary onMonday morning, Mark Skinner,President of the WFH, presented theGlobal Alliance for Progress (GAP).The goal of this program is toimprove treatment and care offeredto people with bleeding disorders indeveloping countries using five mainprinciples:1- Establish a national registry ofpatients in order to increase thenumber diagnosed and establishreliable laboratory testing;2- Create a winning coalitionbetween governments, medicalpersonnel and patients and theirfamilies;3- Promote the practice ofmultidisciplinary care in such a wayas to increase overall care;4- Increase the availability andsafety of factor coagulationconcentrates, the minimal target oftreatment for hemophilia for the WFHbeing 1 IU (international unit) offactor per capita (for example,Canada consumes about5 IU/capita);5- Train patients to take control oftheir disease and encourage theirautonomy and also their involvement
at the heart of the health care system.Presently, 14 countries are involvedin the GAP, including Tunisia, thecountry twinned with the CHSQ.In the psychosocial area, anAmerican named Susan Cutterpresented the results of her study onthe benefits of physical activity. Shecame to the conclusion that childrenwith hemophilia who take part inphysical activity and sports showself-esteem and a perception of theirquality of life equal to that of'normal' children. It all depends onthe careful choice of the type ofphysical activity.During the final plenary session onWednesday morning, MaureaneHoffman, from the United States,presented the results of her studyinvolving bleeds and tissueregeneration in animals. Accordingto her, healing is a bit longer to attainin mice with a bleeding disorderbecause of localized sub-cutaneoushemorrhages in tissue around theinjury or from iron deposits in jointsthat favour repetitive bleeds andangiogenisis (thickening of thesynovial tissue) in the joint. Herconclusion: stopping the bleed isnever as good as preventing it; inthis sense, adequate prophylactictreatment can significantly reducebleeds in such a way as to avoidfalling into the vicious circle ofbleeding - angiogenisis - repeatedbleeds.On Tuesday morning, I attended aninteresting presentation on apromising hemophilia therapyconsisting of inoculating healthy
hepatic cells (or hepatocytes) intothe organism of an affected personto increase the activity of the missingfactor. In a study by Dr. KazuoOhashi, from Japan, they managedto increase the activity of factor IXby 1.5% in a mouse and this, withoutany negative side effects. Theproblem for adapting this therapy forhumans is to gather a sufficientnumber of hepatocytes to obtain asignificant clinical effect, consideringthat for the moment, it's impossibleto produce them with cellularcultures.As for infectious diseases, there'smore and more hope. Dr. JorgeDaruich, from Argentina, gave asession presenting his study thatconfirms that subjects coinfectedwith HIV and HCV should undergothe same treatment with peg-interferon and ribavarine as subjectsonly infected with HCV, since theirresponse to treatment is about thesame (with sustained viral responsesvarying from 27 to 50%), and sincethe therapy doesn't have an impacton the HIV infection. Perhapsundesirable reactions are howevera bit more frequent and intense inpeople who are coinfected, thus theimportance of having the patientfollowed by a multidisciplinaryteam.One of the sessions I was lookingforward to was on Thursday morningthat dealt with innovations in thearea of treatment for bleedingdisorders.First of all, Dr. Magdy El-Ekiaby fromEgypt presented a technique for
Impressions of CHSQ delegatesTHE XXVIII INTERNATIONAL CONGRESS - ISTANBUL, TURKEY
We took advantage of
our visit to Topkapi
Palace, the socio-
cultural event
organized Saturday
evening, to socialize
with our ex-partners
from the Senegalese
Hemophilia
Association (ASH). In
this photo: Mohamed
Yacine, ASH
President, Anta Sar,
ASH Past-president
and François Laroche,
CHSQ President.
7
treating mini-pools of plasma(collected from very few donnors)with solvent detergent to ensurethe safety of cryoprecipitate. Aneffective process, it doesn't affect theproteins and will soon be availablefor testing in countries in theMiddle East and the Maghreb. Thistechnique opens interesting horizonsfor the treatment of hemophilia Apatients in developing countries(remember that only 25% of peoplewith a bleeding disorder around theworld have access to adequatetreatment).Then, Dr. Paul Giangrande, from theUnited Kingdom, gave a presentationabout prolonged action factor VIIIand IX concentrates. The interest forthese molecules resides in the factthat they would have a longer half-life and their potential would be lessimmunogenic (less tendency to causeinhibitors).The most advance research is on'pegylated' molecules with aliposome (a part of the molecule thathas fat). A factor VIII molecule thathas been pegylated in this waybecomes more resistant toinactivation while still, in a way,remaining protected from theimmune response and otherelimination mechanisms; this wouldprolong its action. However, it mustbe said that though the protein seemsto be more clinically efficient, theprolongation of the half-life of themolecule can't be measured in alaboratory.Another advanced study introducedthe notion of 'glycopegylation'(pegylation with a glycosylationtechnique, which attaches the glycolmolecule to another site), aprocedure that doesn't affect themolecule in its chain and wouldprolong its half-life.Other techniques, notably the fusionwith albumin or the Fc-FIX fusion(where the factor IX is fused with theFC area of an antibody), so as toprolong the action of the factorreplacement are also being studied.Other products (TFPI for Tissue FactorPathway Inhibitors or Tissue FactorFunction Inhibitors) acceleratecoagulation time and are alsopromising.And finally, according to Dr.Giangrande, genetic therapy willeventually offer a cure forhemophilia. To be more realistic
however, prolonged factorreplacement concentrates or evenproducts that will acceleratecoagulation time constitute anattainable target in the near future.
François Laroche
Istanbul was my second experienceof a world congress of hemophilia.The first, in Vancouver in 2006, hadan enormous impact on me, and Imust say the same thing happenedagain this year. Congress is anexcellent source of information andan incredible place to meet people.Since the event doesn't only regroupspecialists in the medical field butalso patients and volunteers fromthe hemophilia community, theprogram offered sessions dealingwith both scientific as well as socialissues. Not being a doctor myself,but a patient and volunteer, I'm veryinterested in topics dealing withproblems associated withhemophiliacs, their roles, theinvolvement of youth andinternational support.I'm also very curious to learn aboutnew discoveries. And this is anotherthing the congress is great for: evenif you don't have the training tofollow all the scientific presentations,many sessions, particularly themorning plenaries, are given bypeople who are extremelyknowledgeable in their field, but whoare also able to make thisinformation understandable to ageneral audience.But I must say, one of the mostinteresting aspects at congress iswhat happens on the sidelines. Bythis I mean discussions in the
hallways. Talking about projects thatwe do here, listening to talk abouttheir projects, sharing our respectiveproblems, sharing solutions, etc…These discussions often deal with thesame topics, but each time they'rejust as interesting and informative asthe first.As in Vancouver, I came to the samerealization: the internationalhemophilia community is stronglywoven together, and the worldcongress is an eloquent witnesswhen, in the same room, we can findpeople from around the world whoshare the same questions and eventhe same problems.Of course, the treatment situationisn't the same in every country. Fromone congress to another, the numbersshowing the availability and accessto products are more and moreencouraging, but there's still a longway to go before everyone has accessto the same quality of treatment.When you take part in this congress,you can only become more aware ofthis inequality and, so it's preciselywith the hope that one day this willdisappear that the World Federationof Hemophilia exists first andforemost.This is a résumé of some of the thingsthat came to me when I thoughtabout congress. Yet I know there'smore. But I'll end with a few wordsabout Istanbul. It's a city filled withhistorical monuments, magnificentarchitecture, tones of beige, androcked by two seas and a strait (theBosphorus) with extremely bluewaters.Surprisingly, it's a noisy city, but itsinhabitants aren't stressed out theway you see people in some of the
THE XXVIII INTERNATIONAL CONGRESS IN ISTANBUL (cont’d)
During the farewell
banquet, Mylene
D'Fana hugs her
husband, Dany
Blanchette, while
David Pouliot
shows us what's on
the menu.
cont’d on page 8 >
8
page 7 cont’d >
Inhibitors weekendFamilies living with inhibitors willsoon be able to register for theweekend which will take place thiscoming October 3 to 5 at theEstrimont Suites & Spa in theEastern Townships. A number ofworkshops will be offered for bothchildren and adults.Saturday and Sunday, the childrenwill be able to attend differentworkshops facilitated by health careprofessionals and a yoga specialist.A few physical activities will alsobe organized so the children cansafely work off some of theirenergy. This will be taken care ofby a team of competent youngfacilitators including a number ofCHSQ volunteers.For their part, parents canparticipate in two workshops onSaturday, one on managing stressfacilited by a psychologist, whilethe other will be an initiation toyoga. On the agenda for theevening is a magic show, plus anin-room babysitting service willalso be available for parents.On Sunday, parents who wish totake advantage of this occasioncan take the day off or take part ina café-rencontre.We hope this programming, whichaims to meet the needs parentshave expressed for a break and forinformation for their children, willplease you and encourage you toattend!
Summer CampThis year, our annual summercamp will take place fromAugust 10 to 15 in Saint-Raymond-de-Portneuf and almosttwenty youngsters, including tenhemophiliacs, are registered. Asyou know, this activity is an
important step towards theindependance they can achievewhen they learn self-infusion.This activity takes place under thesupervision of two caring nurses,Claudine Amesse and LouisetteBaillargeon.As well as helping the youngstersperfect their self-infusiontechniques, camp promotes theirintegration into a group of campers,while also allowing friendships tobe forged between younghemophiliacs and their siblings.And finally, we would like to offerour heartfelt thanks to the FrançoisBourgeois Foundation that decidedto support this activity with a $1000donation. We sincerely hope thatthis first collaboration will berenewed for future projects.
Youth activityWe're pleased to announce that theproposed youth activity will be anadventure at the Aqua-Club in ValCartier, near Quebec City onSaturday, August 9, 2008.This activity, which was suggestedby a number of members, targetsthe practice of a sport of choice forthe hemophilia community andmeets our preoccupation withoffering an activity that's both safeand fun for youth. It's also a chanceto have an activity near Quebec City.The $20 fixed price per personremains the same, including theentry fee for the activity and a meal.A reimbursement for gas will begiven by the CHSQ.We suggest you reserve this day inyour agenda. It's one of the rarechances for young people in theCHSQ to meet every year. Takeadvantage of it! §
CHSQ ACTIVITIES
byJoumana Yahchouchi
Program andFundraisingCoordinator
capitals in North America orWestern Europe. To be brief, I likedit very much.
David Pouliot
Once again, the WFH hosted agreat congress. From June 1st to June5th Istanbul, Turkey was host to theXXVIII International Congress of theWorld Federation of Hemophilia.This year was a record year for boththe number of delegates andcountries attending the congress.As with every congress, the sessionsare all packed with information.Two plenaries each day, mainlymedical but understandable in mostcases, that's where most of thedelegates assembled every morning.Fourteen concurrent sessions tookplace each day to meet the diverseinterests of delegates. Varioussessions included information onmedical, multidisciplinary,musculoskeletal, laboratorysciences, and dentistry topics.The social program which, as usual,included the opening ceremonies,is a big highlight of the event. Therewas music and visual performancesof a variety Turkish culture,including the famous whirlingdervishes. During free time therewere always the posterpresentations to see where youcould find studies, research,programs and other informationfrom members in hemophiliatreatment centers, organizations,patients, and families.Congress is always a place to renewold and gain new friendships fromall over the world. It's always sadto realize at the Farewell Dinnerthat the week has gone by so fast.In the end, we all come together toshare the expertise and dreams thatwe have concerning hemophilia.Mike Skinner (WFH President) saidthe daily work that WFH does ismaking a difference in the lives ofindividuals with bleeding disordersaround the world. Even living in adeveloped country, I take away fromevery congress the incredible workdone by our organizations and ourhealth care teams. One thing is forsure: it also makes a difference inmy family's life. §
Mylene D’Fana
CONGRESS (cont’d)
9
World Federation of Hemophilia International CongressIstanbul, Turkey, June 1 to 5, 2008
NURSES’ CORNER
I’m very pleased and excitedto share the enriching experiencesI had when I attended the WorldFederation of HemophiliaCongress, an eagerly awaitedevent for people dealing withbleeding disorders. Personally, thiswas the first time I attended thisinternational event, which tookplace in Istanbul, Turkey, and ourwhole team had to prepare for it.Now I'm just as eager to tell youabout the highlights of thiscongress.
Pre-congressThese meetings requirepreparation beforehand in orderto be able to take advantage ofthe maximum of information thatwill be presented. This preparationis a chance to bring up discussionsbetween international researchersand practitioners. Theseexchanges go on throughoutcongress and complement theenriching presentations given byinvited experts.
The subjects of the presentationsare very varied. This variety meanswe attend conferences touchingon topics in our field of interestand specialization. What's more,this year was particularly prolificin the area of the development ofcoagulation inhibitors. What anopportunity my team and I had!
located far from each other andsometimes not adapted forproblems. So many factors, orobstacles, for people with reducedmobility. This has to be improved!
And lastly, a final word to tell youthat the nurses who representedCanada have agreed to do arésumé of the information wemanaged to gather duringcongress. We hope that this willonly be the beginning of a longand constant process of sharingknowledge amongst ourselves,practitioners, researchers andespecially, patients.
Personally, I'm still looking for newknowledge and the answers tomany questions that this eventbrought up for me. I'd really liketo share the knowledge I acquiredwith all of you and I hope I'll soonget the chance.Happy summer to all! §
The days are fullAfter the morning plenary session,I went from one room to another,with the help of a well-structuredprogram, in order to benefit fromthe research results andexperiences of internationalexperts in this specialized field.Topics as varied as the psychology,social integration and personalperspectives of patients were dealtwith. It's a golden opportunity tolisten to and share withresearchers and practitioners whoare rarely accessible during therest of the year.
The popularity of this type ofgathering is obvious. It leads meto share certain observationsrelated to the physical limits ofthis type of event. The popularityof this event sometimes meansthat rooms are often filled tocapacity; they're sometimes
by Claude MeilleurNurse Coordinatorat the Quebec Reference Centre forpatients with Inhibitors
A MOMENT TO REFLECT
“Waiting to have all the facts before acting condemns you toinaction.”
Jean Rostand
Here are yourlovely nursesduring the cocktailparty prior to thefarewell banquet.From left to right:Claudine Amesse,from theSt.Justine’sHospital, ClaudeMeilleur, from theQuebec ReferenceCentre for Patientswith Inhibitors, andNathalie Aubin,from the MontrealChildren’sHospital.
10
FOCUS ON HEPATITIS C
an extended duration of 72 weeks;those with genotypes 2 or 3 weretreated for either the standard 24weeks or an extended 48 weeks.Participants discontinued therapyif they did not achieve at least a 2-log decrease in HCV viral load byWeek 12. For each genotype,baseline HCV RNA and rapidvirological response (RVR), definedas HCV RNA below 50 IU/mL atweek 4, were evaluated aspredictors of sustained virologicalresponse (SVR) in an on-treatmentanalysis.“Undetectable HCV RNA at week4 is the best predictor of curingchronic hepatitis C in HCV-HIVcoinfected patients”, the authorsconcluded. “In HCV genotype 1patients, baseline HCV-RNA alsopredicts response.” They addedthat for HIV patients with HCVgenotype 3, “RVR may permitshortening therapy duration to only24 weeks of pegylated interferonplus 1000-1200 mg ribavirin.”The ability to reliably determineearly in the course of treatmentwhich patients are likely to achievesustained response allows the restto forgo the side effects and costof further futile therapy.For more information:www.hivandhepatitis.com/hiv_hcv_co_inf/2008/010708_a.html. §
ABC NEWS, December 7, 2007,by Jennifer Macey
Scientists believe they are onestep closer to developing a vaccinefor the hepatitis C virus.The main obstacle to a vaccinehas always been the evolvingnature of the virus and thedifferent strains that can co-existwithin the body to cause infection.The majority of those infected bythe virus have such a weakimmune system that their bodiescannot naturally fight the disease.Researchers in the United Statesplanted human liver tissue in miceto test different antibodies and thestudy, published in the latestedition of the journal Nature, hasidentified antibodies that providebroad protection.Chris Burrell, from the School ofMolecular and Biomedical Scienceat the University of Adelaide, saysefforts to find a vaccine for thevirus have been frustratingly slow.“Seventy per cent of patients whobecome infected have a weakimmune response and a narrowimmune response, and they don'tclear the virus”, he said. “The otherreason is that the virus exists asa mixture of closely related strainsall infecting in the same dose. Sothis is why there is always achance that there'll be a strainthat escapes any immunity thatmight be there.”Professor Burrell says once aperson contracts hepatitis C, thevirus evolves within the body andhas up to 50 different strains thatcan cause infection. But nowresearchers at the ScrippsResearch Institute in the US havemanaged to identify broadprotection for these various strainsafter planting human liver tissuein mice.
“They've chosen the way to makethe antigen quite well”, ProfessorBurrell said. “They've thenscreened a lot of antibodies thatare made against this and usedvery good ways to pick out thebest antibodies, and then they'veflooded the mice with highamounts of this antibody. Sothey've really tried to maximizethe chance of it working, and ithas worked, but obviously it's stilla very hard series of steps to movefrom that to showing protectionin humans and being able to makethe same type of vaccine to workin humans.”Professor Burrell says the study isa significant step towardsdeveloping a vaccine, but hewarns a human trial is still five to10 years away adding that, in themeantime, those people alreadyinfected will benefit from greateraccess to anti-viral treatments.“People can live with the diseaseand people can be cured of thedisease by anti-viral treatment”,Professor Burrell said.
Undetectable HCV Viral Loadat Week 4 of PegylatedInterferon plus RibavirinPredicts Sustained Responsein HIV-HCV CoinfectedPatients
Data continue to accumulateindicating that early virologicalresponse to interferon-basedtherapy predicts long-termtreatment outcome, according tothe latest report from the SpanishPRESCO study, published in theJanuary 2, 2008 issue of AIDS.PRESCO is a prospective, open-label, multicenter trial evaluatingthe safety and efficacy of 180mcg/week pegylated interferonalpha-2a (Pegasys) plus 1000-1200mg/day weight-based ribavirin.Patients with HCV genotypes 1 or4 were treated for either thestandard duration of 48 weeks or
Scientists closing in on Hepatitis C vaccine
by Michel LongCHS HIV/HCVProgram Coordinator
The Focus on Hepatitis C
column has been made possible
thanks to the financial
contribution of
Schering Canada.
11
2008 WFH WORLD CONGRESS IN PICTURES
The Sultan Ahmet Mosque, better known as the BlueMosque, is a veritable architectural wonder. It representsthe last construction of an imperial era.
CHSQ delegates took advantage of congress to meet with their partners from the TunisianHemophilia Association.
The Bosphorus Strait, seen from our hotel. An important artery inmaritime transport linking the Mediterranean, through theSea of Marmara to the Aegean Sea then on to the Black Sea.
Topkapi Palace, the principal residence of the sultans from theOttoman Empire in the XVth to the XIXth centuries, is an importantmuseum today for the Ottoman era…and all its wealth.
During a taxi ride (very numerous in Istanbul and all yellow,just like in New York), we could admire the remains of aRoman aqueduct over 2000 years old.
CHSQ delegates in a restaurant under the bridge that spans the GoldenHorn. In the photo we see: François Laroche, Dany Blanchette, MyleneD’Fana, David Pouliot and Patricia Stewart.
The publication of this newsletter has been madepossible thanks to the financial contribution of these
pharmaceutical companies:
Octaplex is a plasma-derivedprothrombin complex concentrate(PCC), containing human coagulationfactors II , VII, IX and X incombination. It is currently licensedin 26 countries worldwide, includingCanada, for the treatment andprophylaxis of bleeding in hereditaryand/or acquired coagulationdeficiencies of the prothrombincomplex factors. PCCs are used inthe treatment of factor II and Xdeficiency.Wilate is Octapharma's plasma-derived von Willebrand factor/FVIIIconcentrate. It is licensed in 18countries for the treatment andprophylaxis of hemophilia A and/orvon Willebrand disease (VWD).In Canada, Wilate is currentlyapproved for the treatment andprophylaxis of bleeding in patientswith hemophilia A. Octapharma'ssubmission to Health Canada for aVWD indication is currently underreview.
D.P.
BeneFix® soon offered in a2000 IU format
Wyeth Pharmaceuticals announcedon June 13 that it will begin offering
IN A WORDNew CHS Video for SchoolPersonnel
A new video for school personnelproduced by the CanadianHemophilia Society (the Nationaloffice) will be ready in late August,just in time for the new school year.This video, which will replace theone presently available at HTCsmade in the early 90s, will give up-to-date information on hemophiliatreatment and includes interviewswith teachers, gym teachers andschool secretaries who have dealtwith students with hemophilia, aswell as explanations by a HTC nurseand physiotherapist about caring fora child with hemophilia in a schoolsetting.As with all material developed byCHS, it will be available in bothEnglish and French.Look for it on the CHS website inlate August.
P.S.
Octapharma introduces 2 newproducts
Octapharma Canada Inc. announcedthat Wilate® and Octaplex® will beavailable in Canada as of May 2008.
Benefix®, its factor IX recombinantproduct, in 2000 IU vials as early asJuly 2008. What’s more, the productwill be accompanied by a prefilled 5ml syringe of diluant.The 2000 IU format, which can bereconstituted with only 5ml of diluent,will allow people with hemophilia B (and requiring doses equal or superiorto 2000 IU) to prepare fewer vialsand to infuse less diluent for the sameefficacy.For more information, contact yourlocal hemophilia treatment centre.
F.L.
CSL Behring refines Humate P®
CSL Behring reported that it hadmade several refinements toHumate P®, a plasma-derived productused to treat von Willebrand disease.Humate P is now available in aformulation that requires less volumeof diluent. It comes shipped with theMix2Vial® administration set and hasapproval for room temperaturestorage.
D.P.
Baxter to introduce 2000 IUvial size of Advate®
Baxter also confirmed that thecompany will introduce the 2000 IUvial size for its recombinant factorVIII product, Advate® in late summeror early fall, 2008.
D.P.