Canadian Hemophilia Society - Quebec Chapter Newsletter VOLUME 13, NUMBER 2 SUMMER 2005 O n May 30 th , at the Court House in Hamilton, Ontario, the Canadian Red Cross Society pleaded guilty to reduced charges of having knowingly distributed blood products contaminated with HIV and HCV during the 1980s. In exchange for this guilty plea, the Crown dropped six accusations of public mischief for threatening the life, safety and health of the public, which were laid against them November 22, 2002, by virtue of article 180 of the Criminal Code. This offence for the role it played in the distribution of tainted blood is still a criminal act by virtue of the Canadian Food and Drug Act. The accusation reads as follows: “Between January 1, 1983 and May 15, 1990, The Canadian Red Cross Society, in the City of Hamilton and elsewhere in the Province of Ontario and throughout Canada, did on numerous occasions distribute adulterated blood for transfusion to persons who were thereby rendered gravely or even terminally ill, in violation of subsection 8(b) of the Food and Drugs Act, thereby committing an offence contrary to subsection 31(b) of the Act.” The Red Cross will be condemned to pay the maximum fine of $5,000 foreseen for a criminal act by virtue of this law. The sentence will be delivered on June 30. Along with the guilty plea, Mr. Pierre Duplessis, the present Secretary General of the Canadian Red Cross Society, officially apologized to victims. declared: “The Canadian Red Cross Society is deeply sorry for the injury and death caused to those who were infected by blood or blood products it distributed, and for the suffering caused to families and loved ones of those who were harmed. We profoundly regret that the Canadian Red Cross Society did not develop and adopt more quickly measures to reduce the risks of infection, and we accept responsibility through our plea for having distributed harmful products to those who relied upon us for their health.“ The Canadian Red Cross Society will give 1.5 million dollars to the University of Ottawa. Half of this amount will be used to create scholarships for the victims of tainted blood; the other half will be dedicated to research and the creation of a national medical error project endowment. This is the first time that the Red Cross has admitted responsibility for the role it played in the tainted blood tragedy of the 1980s. About 20,000 Canadians were infected with HCV and 3000 with HIV following transfusions with contaminated blood products during this dark period in the history of Canada’s health care service. ∆ [email protected]by François Laroche On May 30 th , the Canadian Red Cross Society pleaded guilty to reduced charges of having knowingly distributed blood products contaminated with HIV and HCV during the 1980s. Mr. Pierre Duplessis, Secretary General of the Red Cross, offering a public apology for the role that the organization played in the distribution of tainted blood products during the 1980s.
Transcript
Canadian Hemophilia Society - Quebec Chapter Newsletter
VOLUME 13, NUMBER 2 SUMMER 2005
O n May 30th, at the CourtHouse in Hamilton, Ontario, theCanadian Red Cross Societypleaded guilty to reduced chargesof having knowingly distributedblood products contaminated withHIV and HCV during the 1980s.
In exchange for this guilty plea,the Crown dropped sixaccusations of public mischief forthreatening the life, safety andhealth of the public, which werelaid against them November 22,2002, by virtue of article 180 ofthe Criminal Code. This offencefor the role it played in thedistribution of tainted blood is stilla criminal act by virtue of theCanadian Food and Drug Act.
The accusation reads as follows:“Between January 1, 1983 andMay 15, 1990, The Canadian RedCross Society, in the City ofHamilton and elsewhere in theProvince of Ontario andthroughout Canada, did onnumerous occasions distribute
adulterated blood for transfusionto persons who were therebyrendered gravely or eventerminally ill, in violation ofsubsection 8(b) of the Food andDrugs Act, thereby committing anoffence contrary to subsection31(b) of the Act.”
The Red Cross will be condemnedto pay the maximum fine of$5,000 foreseen for a criminal actby virtue of this law. The sentencewill be delivered on June 30.
Along with theguilty plea,Mr. PierreDuplessis, thepresentSecretaryGeneral of theCanadian RedCross Society,officiallyapologized tovictims.
declared: “TheCanadian RedCross Society isdeeply sorry forthe injury anddeath causedto those whowere infectedby blood orblood productsit distributed,and for thesuffering caused to families and
loved ones of those who wereharmed. We profoundly regretthat the Canadian Red CrossSociety did not develop and adoptmore quickly measures to reducethe risks of infection, and weaccept responsibility through ourplea for having distributedharmful products to those whorelied upon us for their health.“
The Canadian Red Cross Societywill give 1.5 million dollars to theUniversity of Ottawa. Half of thisamount will be used to createscholarships for the victims oftainted blood; the other half willbe dedicated to research and thecreation of a national medicalerror project endowment.
This is the first time that the RedCross has admitted responsibilityfor the role it played in the taintedblood tragedy of the 1980s. About20,000 Canadians were infectedwith HCV and 3000 with HIVfollowing transfusions withcontaminated blood productsduring this dark period in thehistory of Canada’s health careservice. ∆
Cross, offering a publicapology for the role that the
organization played in thedistribution of
tainted blood products duringthe 1980s.
A n important stage in thesaga of the tainted blood scandaloccurred last May 30th when theCanadian Red Cross pleaded guiltyto the reduced charge of havingdistributed blood products that theyknew were contaminated.It isn’t the sentence itself, a $5000fine, the maximum applicable foran infraction of the Food and DrugAct, nor the $1.5 million spent onscholarships for victims and theirfamilies and for research intomedical errors that will satisfyvictims.What is satisfying, in my opinion,is that for the first time, the RedCross admitted its responsibilityand its wrong-doings in what hascome to be known as the worsttragedy that our health care systemhas ever known.Small consolation, you say.Perhaps… Except that thisadmission of responsibility had tohappen in order to spread a bit ofbalm on the still open wounds ofmany families of victims, or thevictims themselves, who haveeither lost a loved one or theirhealth in this affair that’s beendragging on for 20 years.
Perhaps this will also pave the wayfor the court appearances of theother players who had an importantrole in the 1980s and against whomproceedings are ongoing; however,given that the Red Cross was ableto negotiate its defense, it’simportant that the people andprivate organizations that are alsofacing criminal charges, and whosecases are still pending before thecourts, not be able do the same.Public confidence, especially that ofthe victims and their families, is atstake in our judiciary institutions.On a completely different topic, thisedition marks the start of ChantalRoy taking over responsibility forthe Parents’ Corner from MyleneD’Fana. Chantal is the mother of afour-year-old boy with hemophilia,Gabriel, and of a daughter,Alexandra, who is 6.I invite you to contact her withexperiences that you’d like to shareas parents with other parents andreaders of this newsletter. Good luck,Chantal, in your new responsibility!And finally, I’d like to call yourattention to the editorial by MyleneD’Fana on page 3. The fundraisingprogram that will be instituted bythe CHS, and in which all chapterswill be called on to cooperate,represents a lifebelt that will helpkeep the finances of our respectiveorganizations afloat. It’s for the wellbeing of the whole community ofpeople living with a bleedingdisorder.Have a good summer! ∆
The Red Cross PleadsGuilty to ReducedCriminal ChargesFollowing its Appearancein the Tainted Blood Case 1
A Word from the Editor 2
Editorial 3
A Word from theExecutive Director 4
Youth Echo 4
Fundraising 5
Focus on hepatitis CHepatits C Treatment:An Important Selection 6
Parents' CornerCHS Step by StepProgram 7
Nurses' CornerRare CoagulationDisorders :Factor X Deficiency 8 & 9
PortraitJacques Roy 9
SCHS Medical Symposiumin PEIHepatits C Conference 10
CHSQ Activities 11
Meditation and Health 12
• 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, 115 in English
Legal deposit : Bibliothèque nationale duQuébec, 2005.
The opinions expressed in the various columns are those of the authors and do notnecessarily represent the viewpoint of the CHSQ.To let us know your comments or to give your opinion on any related topics,send your text to the following address:L'Écho du facteur, CHSQ, 10138, Lajeunesse, Suite 505,Montreal (Quebec) H3L 2E2Telephone: 514 848-0666 or 1 877 870-0666Fax: 514 904-2253or by e-mail to the followingaddress: [email protected] Site: www.hemophilia.ca
contacting Aline or me by e-mail orphone.
We also have toput some of ourpresentactivities on theback burner,along withsomeinteresting newones that wehad hoped tooffer, until ourfinancialsituationimproves.
Increasing our revenues is a challengethat we’ve been working on at alllevels of the organization. Fundraisingpossibilities? Colouring books, Bowl-a-thons, golf tournaments…tomention a few. We’ve been doingfairly well with these types of events.But what I mean by okay, in the caseof the colouring books, is that we don’tseem to be able to sell close to whatwas sold in the past - up to 40,000copies a year.
Six or seven people were capable ofselling thousands of copies each bydistributing the books amongst theirnetwork of contacts who then tookcare of sales. In recent years, about6000 copies were sold annually.However, since 2003, the sales profilehas changed. We’ve seen a drop inthe number of volunteers involvedbut, paradoxically, sales levels haveremained stable thanks to new salesto companies and the network ofdaycare centres through solicitationdone by CHSQ staff. With theinvolvement of a larger number ofvolunteers and this new contact withcompanies, perhaps we could onceagain reach the sales levels thatexisted in the 1980s.
Back in 2003, the CHS investigatedthe feasibility of conducting a NationalCapital Campaign to raise funds for avariety of projects including research,awareness building and programdelivery. This was the beginning of aprocess to create a nation-widefundraising program that culminated
A s the new President of theCHSQ, many things come to mindthat I would like to tell you about inthis editorial. When I accepted thisposition I knew there were manychallenges to meet. The mostimportant one of all was workingwith another deficit budget for theyear as a result of declining revenuesat all levels of the organization.
Since I joined the Board, and as amember of the CHS Board for thepast four years, we have struggledto adopt a balanced budget eachyear at both levels. It’s not alwayseasy to cut things that I feel areimportant to our members.However, as administrators, we feelthat we can’t continue to operatewith a deficit budget and that wehave to take charge of the problemand come up with solutions otherthan cutting our members’ activities.
The CHSQ Board of Directors hasbeen looking at many possibilitiesfor our budget and for our activities.We’ve increased participation feesfor members attending activities, cutour administration expenses to thebone, while still maintaining basicservices and activities, including theimportant work of advocating forthe maintenance of quality medicalcare.
We have to start looking at ways tocut back the expenses involved inholding various activities like ourfamily weekend and the kids’summer camp. To this end, we’d liketo ask parents whose children havealready been to camp or who willbe going this year their opinion andsee if they would be comfortablecounting on a single nurse, insteadof two as is the case presently, toassure medical care during camp.So we ask you to send us yourcomments on this subject by
in a fundraising summit last Februaryin Toronto.
This summit, which I had theprivilege of attending as a CHSdelegate, along with the CHSQ Past-president, the Executive Director,the Fundraising Coordinator and theother two CHS delegates, was fundedby the Public Health Agency ofCanada, Office of the VoluntarySector, as well as the CHS. It was avery important meeting that lastedtwo days in which a proposal for arevenue development programbetween CHS and all the provincialchapters would be established thisyear. It was in Prince Edward Islandlast May 29th that the CHS Board ofDirectors adopted the Program.
A National Fundraising Council willbe created to provide guidance andcounsel to the revenue developmentprogram. It will be responsible forensuring that the interests andperspectives of the various provincialchapters and regions of CHS arerepresented and taken intoconsideration in the implementationof the revenue developmentprogram.
The CHSQ Board of Directors and Iare very enthusiastic about thisprogram. If it works as planned,hopefully in 2006 we should see anincrease in our revenues. If anyonewould like to have more informationabout this program don’t hesitate tocontact Aline Ostrowski, ourExecutive Director, or me.
In the meantime I want to make sureeveryone is aware of how importantit is for our Society for members tobe involved and to keep an openmind and think about what each ofus can do to help with this program. I would be thrilled if, at the nextAGM, our Treasurer could presentthe financial statements with asurplus for 2005, as well as abalanced budget for 2006.
I want to wish everyone a greatsummer. Hopefully the weather willcooperate for your holidays and giveyou time to think about what youcan do for our Society. ∆
In order to remain healthy andsolidify itself, an organization mustmaintain its vision with coherentgoals and, consequently, from timeto time, it must reflect upon itsstrategic orientation and its structurewhen necessary.The CHSQ will be holding a strategicplanning exercise to discuss themission and goals of theorganization and prioritize thesegoals because, at this point in time,the organization’s actions do notproportionally reflect existing goals.In fact, advocacy, priorities 1, 2 and4 of the organization’s goals, andresearch, priority number 3, togethermake up 4.5% of expenses in 2004,while activities for members, whilelisted as fifth in priority, account for56% of expenses.Depending on the choices it willmake, the CHSQ will have to definethe percentage of its expenses it
wishes to allocate for variouspriorities and reflect on theimplication of these choices uponthe internal structure of the CHSQ.More than ever, fundraising remainsa major preoccupation sincegovernments are less generous thanin the past and since, to preserve acertain level of autonomy and notbecome totally dependant onpharmaceutical company fundingand fluctuations in their markets,we must diversify our sources offinancing.Remember that in order to maintainthe same level of services from theCHSQ, the Board of Directors hadto adopt a $7000 deficit budget forthe year 2005.The collaboration between the CHSNational and all the provincialchapters that the NationalFundraising Program requires (seethe editorial for more details) willhelp build one strong organization.In order to combine the strengthsof everyone, we will need yoursupport so that, together, we willcontinue to improve the quality oflife of our members. The monetarybenefits from new fundraisinginitiatives that will be instigated inQuebec as well as profits from someof our revenues will be integratedinto the sharing formula with theCHS.
This new formula aims to enrich bothmonetary and human resourcesthrough a sustained effort by all, boththe Quebec and National Chapters.When we solicit you this autumn fora donation for the organization, wewould like you to keep in mind theidea of solidarity with people whoshare the same reality as you andyour family.Within this process to improve itsperformance and meet its objectives,the CHSQ, as well as the CHS, hopesto implant a development programto train its volunteers. The firstactivity for members of the board ofdirectors and employees will takeplace in June. This will be aninteractive workshop that will helpus understand how to combineeveryone’s strengths, whilerespecting individual roles. Otherworkshops designed for volunteersat other levels will be developed for2006.Over the past few years, many peoplehave decided to bring their expertiseas volunteers to the CHSQ, and theorganization has gained from this.Don’t hesitate to contact our officesto find out about different possibilitiesfor getting involved:Together we’ll build the future ofour organization. ∆
that we can include you on ourmailing list for the youth group. Infuture we’ll be organizing variousother types of meetings.
For those who are interested in thisactivity, but who haven’t yet beencontacted, we unfortunately can’tpromise that you’ll be able to join usfor this game. Nevertheless, get intouch with us as soon as possible,and at least you’ll have a chance ofjoining in next time.
As for the details of this activity, it’sfor people between 16 and 25 yearsof age, who are members of theCHSQ and have a bleeding disorder.What’s more, we also acceptbrothers and sisters and a boyfriendor girlfriend of the person with a
bleeding disorder. To register, werequire a $20 contribution for thegame and the restaurant. Note thatif you don’t show up, you won’t geta refund because the tickets havealready been bought and aren’trefundable.
On August 18th, the plan is to meetat the Lucien-L’Allier metro station(near the Bell Centre) at 3:45 PM.From there we’ll walk to the Cageaux Sports restaurant. Finally, around6:00 or 6:30 PM we’ll leave therestaurant and walk to the Percival-Molson Stadium where the Alouettes’game begins at 7:30 PM.
We’re sure to have a good time.Looking forward to seeing you nextAugust 18th. ∆
It’s finally happening, our firstyouth activity will take place nextThursday, August 18th. We’ll behaving supper at the Cage aux Sportsas planned, and then we’ll attend aMontreal Alouettes evening game.A registration form has been sent tothose we met during the familyweekend. Before we explain someof the details, we’d like to pass onthe invitation to all adolescentmembers and young adults tocontact the CHSQ, whether or notyou’re interested in this evening, so
CHSQ Bowl-a-Thon:a striking successWe’re delighted with the successof the first edition of the CHSQBowl-a-Thon that took placesimultaneously last May 1st atChampion Lanes in Greenfield Parkand at the Salle de quilles Saint-Pascal in Beauport.The firstedition of theBowl-a-Thon was asuccess inboth QuebecandMontreal— afundraising success that broughtin a net profit of $5786. Also asuccess due to the support ofmembers, their families and friends.A winning teamIn Quebec City, the success wasmade possible thanks to the workdone by a small team of volunteersthat Chantal Roy recruited for thesale of tickets. The Salle de quillesde Saint-Pascal in Beauportwelcomed 120 players who shared24 lanes. The Quebec group raised$2134 for this first edition of theBowl-a-Thon with $710 indonations.In Montreal, the team selling ticketsincluded Mylene D'Fana, CHSQ
President, Nayla Syriani,responsible for the FundraisingCommittee special events workinggroup and CHSQ staff. ChampionLanes welcomed 282 players filling27 lanes. The Montreal Bowl-a-Thon group raised $3652 net profit.Winning sponsorsWe mustn’t forget our sponsorswho played an active role in thissuccess and we thank them. Bothin Montreal and Quebec, playerswere spoiled by the number andquality of door prizes that weregiven out.Door prizes included giftcertificates, movie, museum andtheatre passes as well as gifts.The second edition of theBowl-a-Thon in 2006Encouraged by the success of thefirst edition of the CHSQ Bowl-a-Thon, this fundraising event willbe held once again next year andwill become an annual fundraisingevent. The family atmosphere thatwas so appreciated by allparticipants will be maintained.A must-do eventThe second edition of the CHSQBowl-a-Thon will be announced inthe Winter 2005 edition of l’Echodu facteur. We’ll let you know howto get your tickets and maybe youcan even reserve your own lanefor a group or company, whoknows!This will be an annual event not tobe missed.
A new distribution partner forBrimblehornIn the Spring 2005 edition of L’Échodu facteur, we told you about ourefforts to find a new partner todistribute Brimblehorn all overQuebec. We’re happy to announcethat Renaud-Bray, the largestbookstore chain in Quebec, will bedistributing the Brimblehorncolouring book in 25 stores acrossthe province.The CHSQ has always consideredthe colouring book as a productwith great potential fordevelopment, and rightly so. TheRenaud-Bray agreement hasconfirmed this.
To this end, Brimblehorn’s colouringbook will become a universal story,accessible to all culturalcommunities. Since it won’t onlybe a Christmas story, it will now besold all year long. Depending onsales, it could be re-edited duringthe year to include new and excitingadventures, allowing us to developthe Brimblehorn collection to thedelight of our readers and buddingartists.The full potential for developmentof the Brimblehorn collection willbe made possible through thisdistribution agreement with a majordistribution partner in the marketwe’re seeking to develop.This agreement with Renaud-Braywill add to our present distributionnetwork made up of a group ofhighly active volunteers and to thesupport of our partners andsponsors as well as that of privatecompanies and daycare centres.Brimblehorn will be warmly andenthusiastically welcomed in 2005-2006 by everyone, despite the factthat its unit price has now beenfixed at $7, along with a largerclientele of youngsters who lovecolouring books. We truly hope thiswill be the case for Brimblehorn.Until the new edition Brimblehorn’sBirthday comes out in the autumnwith a new Brimblehorn adventure,you’re invited to sharpen yourcrayons and recruit new friends forBrimblehorn. Don’t miss out on thisopportunity! ∆
Charles Gendron gets ready to make a strategicthrow, while William Martin is listening closelyto advice from his mother, Isabelle Servais, duringthe SCHQ Bowl-a-thon in Quebec City.
6
hepatitis C, mainly fatigue. A loss ofweight, if necessary, can help diminishthe signs of inflammation in the liverand reverse the first signs of hepaticfibrosis. Prudent consumption ofalcohol would be highly advised.However, the 50–year-old man, if heagrees to reduce his alcoholic intake,could profit from hepatitis Ctreatment. The actual state of his liverremains to be seen before proceedingwith the idea of treatment. Here iswhere a biopsy comes into play. Thefibrous state of the liver is evaluatedaccording to a scale that goes fromF0 to F4. If fibrosis is estimated at F0or F1, the liver hasn’t really sufferedfrom hepatitis C and treatment couldbe avoided or put off to a later date.The advice offered to the first youngwoman also applies to the 50-year-old man. But if fibrosis is at the F2 toF4 level (F4=cirrhosis), treatment isimperative.If the biopsy must be avoided, it’s stillpossible to estimate with fairly goodprecision the level of fibrosis in theliver by taking into account the ageof the subject, ALT levels, alcoholconsumption levels and the resistanceto insulin (presence or not ofdiabetes). A reduction in the numberof blood platelets is also a goodindicator of the severity of hepaticdisease.The last stage before beginningtreatment is to know the genotype ofthe virus, since the length of treatmentwill depend on it: twelve months forgenotypes 1 and 4 and six months forgenotypes 2 and 3.The combination of all thisinformation will allow one to targetpeople in whom the actual benefitsof treatment outweigh theinconveniences, which aren’tnegligible. ∆This text is based on an article by N.C. Teohand G.C. Farrell – Management of chronic hepatitisC virus infection : A new era of disease control,Internal Medicine Journal 2004; 34: 324-337.
O ver half the people treated forhepatitis C can clear the virus and becured. However, this treatment stillimplies a number of side effects. Thusthe selection of patients who wouldbenefit by this treatment is still animportant step in the follow-up ofthose infected with the hepatitis Cvirus (HCV).When the time comes to decidewhether or not a carrier of HCVshould be treated, it’s important tokeep the purpose of the treatment inmind:• To prevent liver failure• To prevent cancer of the liver• To slow the development ofcirrhosis by stopping the progressionof hepatic fibrosis and even reversingit• To improve the quality of life.Clinical studies of subjectssuccessfully treated show that arelapse after the disappearance ofthe virus is extremely rare. This iswhy we talk about a cure.The present treatment combiningpegylated interferon with ribavarinover 12 months brings a cure in 40to 60% of people infected with HCVgenotype 1 – the most common inNorth America – and almost 70% inthe case of genotype 4. A carrier ofgenotype 2 or 3 can even hope foran 85% success rate after only 6months of treatment. These types arefairly rare in our region.Treatment for hepatitis C is indicatedwhen the risk of progressive liverfibrosis outweighs the risksassociated with treatment. About 30%of chronic carriers of HCV will see aworsening of their hepatitis that willlead to cirrhosis in 20 to 30 years. Inthose who will have cirrhosis, therisk of liver cancer is 2 to 5 % peryear.
FACTORS IN THE PROGRESSIONIt’s well documented that hepatitis Cwill progress rapidly in certain casesbut not in others. According topresent knowledge, the factorsinfluencing the progression ofhepatitis C are:
- Age at the time of infection: theyounger the person is, the slower theprogression;- Age at time of diagnosis: when thediagnosis is done after 50 years ofage, liver fibrosis is often moreadvanced than if the diagnosisoccurs earlier in life;- Gender: the progression tends to bemore rapid in men;- Excessive consumption of alcohol:this means the equivalent of 50 gramsof alcohol per day (4 drinks per day):progression is quicker and the risk ofliver cancer increases;- Obesity, insulin resistance:accelerates the progression andincreases the risk of diabetes, apathology that itself increases the riskof progression;- ALT levels (hepatic enzyme): a levelthat remains normal is usuallyassociated with slow progression;- Immunosupression (transplantationor HIV infection): the viral load (thenumber of particles of the virus in thebody) will increase and, because ofthis, there will be a more rapidprogression;- Presence of another hepatitis: theprogression is increased if hepatitisB or D is present along with hepatitisC.On the other hand, other factors willhave no effect on the speed ofprogression: genotype of the virus,viral load in people with a healthyimmune system, moderateconsumption of alcohol and ironcontent of the liver. However, the lasttwo items are still controversial.By combining all of these risk factors,it’s possible to obtain two casescenarios:1) A 30-year-old woman, infectedwhen she was 20, thin, who doesn’tdrink. Her risk of developing cirrhosisin the next 10 years is about 3%.2) A 50-year-old man, infected whenhe was 40 years old, obese and whodrinks six beers a day: his risk ofcirrhosis in the next 10 years climbsto 50%.
FOLLOW-UP OR TREATMENTIn the first case, a regular follow-upshould help avoid complicationsassociated with hepatitis C and insurea good quality of life for this woman.Appropriate advice could improvesymptoms sometimes associated with
The Focus on hepatits Ccolumn
has been made possiblethanks to the financial contribution of
Schering Canada.
bySuzanne ChampouxSpecial Collaboration
7
Program. For a few years now, boysfrom 5 to 15 years of age who have ableeding disorder go camping at anoutdoor resort from Friday evening ‘tilnoon on Sunday along with theirfathers.The main objective of this activity isto increase the implication of fathersin their children’s treatment and togive mothers a break. Since we’veinherited family traditions from ourparents, the father often works to bringin the largest part of the income whilethe mother takes care of the healthproblems due to her work scheduleand reduced salary, as well as becauseof her natural ability to care forchildren.Personally, I think the second goal ofthis activity is also to help cut theumbilical cord and give the fathers achance to prove that they can betrusted and that they’re able to carefor their children when they’re givena chance and the place to do this. Thisis the case for most fathers that I know,anyways.The other goals are to learn and sharein the child’s successes and challengesin a context of sharing andcamaraderie. There are informationand training sessions on various topics.During this weekend, activities include:canoeing, fishing, playing in trees,nature walks, swimming, archery,horseback riding, campfires, singing,storytelling and more. The goal is toenjoy activities that are out of theordinary and enriching to help increaseself-esteem and develop confidenceand a special relationship, that will beremembered for a long time. Theactivities are offered to boys from 5 to15 years of age so that they can allparticipate.The presence of a nurse on site meansthat if an accident occurred wheretreatment had to be administered,they’re in good hands. The meals areprepared by the resort so that everyonecan gain as much as possible from thefather-son activities.This activity achieved its mainobjectives and helped createconnections between fathers and sonsliving with a bleeding disorder andreached a large portion of the familiesaffected. The CHSQ ProgramCommittee will study the possibility ofincluding this type of activity in itsprograms for 2006.
Thank you. ∆André Laganière
L ast month I was privileged to besponsored by CHS-National to attendthe official launch of the new CanadianHemophilia Society Program: Step byStep, funded by Bayer, that took placeMay 27 to 29 in Prince Edward Island.This new Step by Step Program, createdfor parents of children with a bleedingdisorder, is divided into five sections:Info kits, a journal, Parent toParent, the Forum and Just theGuys.The Info kits are the new bags thatwill be given to parents whose childis newly diagnosed with a bleedingdisorder. The first bag will replace theone called It’s a Boy. You probablyreceived this bag when your child wasdiagnosed (a canvas bag containinginformation, knee pads, a video, abook, etc.). The It’s a Boy bag was nolonger considered appropriate, sincethere are also girls with hemophilia!In fact, in our next edition we’llintroduce you to Audrey, our littlehemophiliac from the Quebec Cityarea.From now on, all newly diagnosedparents will receive the newinformation kits. They’re brightlycoloured (red for hemophiliacs andblue for children diagnosed with VonWillebrand Disease). The first kit willbe given out when the diagnosisoccurs and will contain the book AllAbout Hemophilia — a Guide forFamilies, kneepads, an icepack andinformation about the CHS. A secondwill be given out when the child isabout one year old. This one willinclude the book The EmergencyRoom – Be Prepared to Succeed anda few storybooks. The last kit, in theform of a lunchbox, will be given outwhen the child is about four years oldand will contain a CD and bookletintended for school personnel.These new kits will be clearlyidentified as being created by theCanadian Hemophilia Society. Theywill contain educational documents,information about CHS and the localchapter and useful items for the family.
There will also be a personal journalthat parents can use to write downpertinent information, theirimpressions, challenges and importantstages.The third stage of Step by Step is calledParent to Parent. This is an on-lineprogram that allows parents to gettogether on the Internet to share theirpreoccupations and their questions.If you’re interested, simply log ontothe site at:www.hemophilia.ca/stepbystep/enand go to the Parent to Parent section.Registration is confidential and youcan chat with families who are goingthrough the same experiences as you.An electronic bulletin board (theForum) is also available for parentson the program website where parentscan read about particular themesrelated to the education of a child witha bleeding disorder and shareexperiences, advice and successes.A new topic will be introduced eachmonth. I encourage you to check itout!The fifth stage in the Step by Stepprogram is called Just the Guys andthere’s no one better than a father totell you about it. André Laganière isthe father of a two-year-oldhemophiliac son in Drummondville.He was also able to take part in theofficial launch of the program, so I’lllet him tell you about it.
A place where a father can learnhow to play a more active role inthe care of his child who has ableeding disorder
F irst of all I’d like to thank the CHSQfor having allowed me to take part inthe launch of the new Step by StepProgram that took place inCharlottetown last May 27 to 29. Itwas an enriching experience due toboth the people I met and the contentof the sessions.I got to meet the leaders from each ofthe chapters as well as from National,and to see first hand how responsible,important and competent the CHS is.It also allowed me to understand theurgency for the implication ofmembers in order to allow theorganization to continue to offer thesame quality of services. But that’sanother story.The goal of this article is to tell youabout an activity that is in its fourthyear in Ontario that’s becoming moreand more popular, and that is beingencouraged by the Step by Step
A s this article goes topress, summer vacation will almostbe here. Despite consecutiveweekends with bad weather, I’msure that sunny days will arrivefilled with a promise of warmth andgood times. Dreams of bike rides,canoeing, kayaking or elseswimming (remember to bringalong your protective equipment),trips, other adventures andsurprises!As we peel off our layers of outerclothing, we feel freer, our spiritsrise and we smile again. Summeris so nice. I hope you enjoy itthoroughly. Nonetheless, I‘d likeyou to read the following textbeneath a parasol, by the ocean orbeside a pool if you prefer.We think of hemophilia A and B asrare coagulation disorders, true, butfactor X deficiency (FX) is evenmore rare. To date, only 50 caseshave been identified in the world.It’s estimated that this deficiencyaffects one person in 500,000! Itsrarity explains this lack ofinformation, even among healthprofessionals. People who have thisdisorder, and their families, havevery limited written information.As you already know, a few yearsago, the nurse coordinators fromthe Quebec Hemophilia TreatmentCentres took on the task of writinginformation booklets for each ofthe rare coagulation disorders. I’llcontinue in this vein by giving ashort resume of the contents of abooklet entitled Factor X deficiency:a rare coagulation disorder. Thistwenty-page booklet will be edited,translated, published anddistributed by our partners at theNational level of the CanadianHemophilia Society within the nextfew months.
their child, who is born with thedisorder. It is an autosomal recessivegene. Both parents must transmitthe defective gene in order for thechild to have the disorder. Here also,you can read the booklet to betterunderstand the specific mechanismfor the transmission of the disorder.There’s another form of factor Xdeficiency that isn’t hereditary, butacquired. Over his or her lifetime, aperson develops antibodies thatdestroy his own FX. This coagulationproblem is also extremely rare.The symptoms are different for eachperson. However, it can be assumedthat the lower the level of FX, themore the symptoms are severe.
Intracranial hemorrhages are fairlyrare in people with FX deficiency.However, when they occur, theyhave a tendency to be repetitive(recurrent).Also, people with FX deficiency don’tnecessarily have joint bleeds, butthose who do can develop long-term complications.It’s imperative that people sufferingfrom this deficiency learn torecognize the various signs andsymptoms of certain hemorrhagesthat could threaten their lives or theintegrity of a limb so as to reactproperly and within a reasonabledelay.People with a mild to moderatedeficiency must pay particularattention to this lesson; they oftendon’t feel it applies to them, giventhe rarity of their symptoms. Theyhave a tendency to forget theircondition. Because of this, they’reoften at greater risk for notrecognizing a major bleed.Treatment consists in theadministration of intravenous blood-derived products. Fresh frozenplasma and concentrate containing
A few words about thediscovery of the deficiencyDuring the 1950s, two independentgroups of researchers originallyidentified factorX deficiency. In1956, Telfer andcolleaguesreported thehistory of a 22year-old patientnamed Prowerwho manifestedbleedingproblemsbecause of adeficiency infactor X; in1957, Hougieand colleaguesin turndescribed anabnormalcoagulationprofile in a 36year-old man named Stuart.At that point, tests carried out inlaboratories showed that mixingthe blood samples belonging toPrower and Stuart didn’t correctthe bleeding problem. This missingcoagulation factor was namedStuart-Prower factor, today knownas factor X. I find it interesting toknow the origin of things and hopeyou share this interest. But let’skeep going!As with FVIII, FIX and othercoagulation factors, FX is a proteinpresent in the blood that plays animportant role in the coagulationcascade. This latter is the chainreaction that occurs when a bloodvessel is damaged. As you probablyalready know, when a blood vesselis injured, all coagulation factorshave a role to play in holding theplatelet plug in place in order for itto form a permanent clot that willstop the bleeding. To know moreabout this coagulation process, youhave to read the booklet! (Editor’sNote: Or see the CHS website atwww.hemophilia.ca/en/2.1.3.php)Factor X deficiency is a hereditarycoagulation disorder; this meansit’s transmitted from a parent to
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bySylvie Lacroix
Nurse Coordinator at theQuebec Reference Centerfor the Treatment of Patientswith Inhibitors
Factor Xdeficiency is
transmitted by aautosomal
recessive gene;it means thatboth parents
must transmitthe defectivegene in order
for the child tohave thedisorder.
FX Level
• + 10 % of normal FXin the blood • From 1 to 10 % normalFX in the blood • - 1 % normal FX in theblood
Symptoms
Few problems with bleeding Light to moderate bleeding Severe bleeding
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FX, called prothrombinic complex,are the two products used. Thereis no concentrate containing justFX.Pregnancy in women with FXdeficiency is often associated withspontaneous abortion, placentaldisplacement and premature birth.Researchers Kumar and Mahta(1994) reported the history of fourpregnancies in a woman with factorX deficiency. The two firstpregnancies resulted in the birth oftwo premature babies, at 21 and 25weeks gestation. The two babiesdied soon after birth. The womanhad received fresh-frozen plasmafor severe bleeding during thesetwo pregnancies. Moreover, duringher second pregnancy, the motherhad received prothrombiniccomplex (containing FX) as apreventive measure, during the twolast trimesters of her pregnancy.During the course of the third andfourth pregnancies, she receivedpreventive treatments withprothrombinic complex at the startof her pregnancy. She then gavebirth to two children at 34 and 32weeks gestation respectively. Thetwo children survived.Women also present with excessiveand prolonged menstrual bleeding(menorrhagia). When the bleedingis excessive, various treatmentssuch as oral contraceptives orCyclokapron can be used.Cyclokapron is a medication takenorally that helps to stabilize the clotand thus better control bleeding.Some women must useconcentrated prothrombiniccomplex containing factor X tocontrol menstrual bleeding.And finally, as is the case with allpeople who have a bleedingdisorder, it’s highly recommendedthat those with factor X deficiencybe registered and followed in ahemophilia treatment centre. Thisway, they have access to concertedmedical care, managed by aninterdisciplinary medical team ofexperts interested and trained inthe management of coagulationproblems.On this note, have a nicesummer! ∆
Jacques Roy joined the CHSQover two years ago and was electedto the Board of Directors asTreasurer. Jacques grew up inQuebec City and moved to Montrealand where he's lived ever since.A chartered accountant byprofession who has worked for anumber of years, amongst otherthings, as the accountant for theWorld Federation of Hemophilia,Jacques was planning on retiringin 2003, but couldn’t refuse acompany that called on him for hisservices on a part-time basis. It wasat this moment that the CHSQjoined the list of organizations inwhich Jacques was already involvedas a volunteer. Jacques worked hardduring his first year with us to jugglehis time between his professionalobligations and his work in thevolunteer sector.Finally, last year, Jacques managedto retire - at least as far as the jobmarket is concerned. But in no wayhas he stopped sharing hisdedication, his professionalism, hisexpertise with numbers, hisreliability and his rich personalitywith organizations such as ours.Jacques says he’s learned a lot byworking in the volunteer sector andhas adapted to the reality whereconsensus and consultation are
more acceptable than in the worldof business. He thinks that hesometimes passes as a bit of a‘capitalist’, but that thepersonalities, strengths anddifferent abilities of each person onthe teams he works withcomplement each other and areused for the common good.Jacques inspires respect from alland his self-imposed demands arestimulating and contagious. Overtime, other sides of his personalitysuch as his sense of humour andhis passion for travel have addedto those that we already know.We are lucky to have Jacques onthe CHSQ Executive Committee andhave benefited from hiscontributions on a number ofimportant dossiers in 2004.Whether it be the supervision offinancial operations, participationand follow-up at meetings, jobinterviews or visiting locales for thenew office, we can always counton Jacques and the jobs he has donehave always led to a clear goal.Jacques was awarded “Volunteerof the Year” in 2004 and is morethan worthy of this title. On behalfof all of us, Congratulations,Jacques, and from the bottom ofour hearts, Thank you! ∆
A.O.
Jacques Roy, receiving the 2004Volunteer of the Year Award fromPatricia Stewart, Past-presidentof the CHSQ.
- inability to feel refreshed after arest- rapid and dramatic fatigue- daily interference in theprofessional and social life of theperson.HCV is a virus that causesprogressive damage. In fact,cirrhosis, which impliesinflammation and scarring of theliver, takes many years. Cirrhosisis slower in women under 40. Itoccurs faster in men over 40. Theprogress of the damage caused bythis virus is still more rapid in thecase of co-infection.Finally, contrary to what you mightthink, when aperson has alivertransplant, theliver is quicklyredamaged. Aperson couldneed anotherliver as soonas five yearsafter thetransplant.This is why aliver transplantis only donewhen thefollowingsymptomsoccur: thestomach is filled with liquid, thereis an accumulation of toxins in thebody and large veins bleedspontaneously. In this case, the livermay be damaged to up to 75%.Presently, the waiting time for aliver varies from one part of thecountry to the next and from oneblood type to another. In Ontario,the waiting time for a livertransplant can, unfortunately, be 4years. This is why a regular follow-up with a hepatitis C specialist isnecessary so that the symptoms ofa diseased liver can be recognizedand the patient can be put on awaiting list for the organ as soonas possible.During the symposium, analternative procedure for liverbiopsy was presented, good newsfor hemophiliacs. Three methods
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The strategy for
slowing down the
progression of
damage caused
by HCV includes
education,
changes to
everyday habits
and
communication.
O n May 27, 2005, during amedical symposium held in PrinceEdward Island by the CHS, Dr.Kevork Peltekian and the nursepractitioner from the QueenElizabeth II Health Sciences Centrein Halifax, N.S., Geri Hirsch, gavea presentation on the effects oftreatment and hepatitis C on thelife of patients infected with thevirus (HCV). Data presented duringthis symposium was based on dataavailable in the Maritimes.Nevertheless, it is representativeof Canada.Dr. Peltekian gave a resume on thetransmission of hepatitis C. Initiallytransmitted by people sharingneedles during drug use, hepatitisC was then transmitted to peoplewho received blood transfusionsfrom donors previously infectedwith the virus. There has been nocase of transmission reported inthe past 15 years.The means of detecting this virusin a person are: EIA and RIBA teststo detect initial antibodies and PCRtesting to confirm the presence orabsence of the virus in the patient.During the symposium,consequences of infection withhepatitis C on the life of a personwere also discussed as well as thehelp that is available in relation tochanges to lifestyle habits that thepatient must undertake.When a patient is infected withhepatitis C, fatigue can be a chronicproblem. In fact, many patientscomplain of a lack of concentrationand energy, which can be qualifiedas lassitude. Lassitude is a statecaused directly by the presence ofthe virus in the brain and not bythe fact that the liver is weakenedby the virus. A magnetic resonancespectrograph can show theinfluence of HCV on the brain.The symptoms of lassitude are:- feeling of being in a mental fog- fatigue following an effort
byMartin Kulczyk
were presented: the fibroscan, anon-invasive method, and theelectrograph that measures thetexture of the liver.This last method uses sound wavesto verify the elasticity of the liver,which determines its health. It willtake at least three years for HealthCanada to approve this technology.There was also question of thetherapeutic supervision of chronichepatitis C. In the health centrewhere Geri Hirsch works, along witha physical examination, they alsogive instruction about viraltransmission, the modification of apatient’s lifestyle, about hissymptoms, and about everythingthat is associated with the hepatitisC virus. After this evaluation, theclinic proposes a comprehensivecare program specifically designedfor the treatment of hepatitis in thisperson (blood tests, testing the stateof the liver, etc…).The strategy for slowing down theprogression of damage caused byHCV includes education, changesto everyday habits andcommunication. Under education,there is the presentation of hepatitisC and its consequences. As forlifestyle habits, this consists in thecombination of a simple programthat the patient can follow, alongwith the measures taken by thepatient i.e. family support, clearobjectives, etc. Regular patientfollow-up is essential.As for communication, there is theimportance of the patient’ssatisfaction with his health careprofessionals. Without thissatisfaction and confidence, thechances for success in this program,whose goal is to improve the life ofthe patient, is limited. It’s importantto remember that changes tolifestyle take time.Thus, it’s essential that the patientand the members of his family aswell as the health professionals takethe time needed to discuss thingsso that the patient can feel confidenthe can achieve the lifestyle changesthat will have a positive effect onhim. ∆
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form: (514) 848-0666 or1 877 870-0666 or [email protected] will be given out inSeptember 2005 to the winningcandidates.
Hepatitis C Information Day
On September 24, there will bean information and discussion dayabout hepatitis C. Dr. BernardWillems, hepatologist from CHUM –St. Luc Hospital, will be availableto give a presentation and duringthe second part of the day there willbe a café rencontre during whichparticipants will be able to sharetheir experiences.The cost is $5 for members for theday. We’re considering holding thisactivity in Trois-Rivières and areawaiting an answer from you beforeJuly 15th to confirm this idea. Wewould appreciate it if you wouldcontact our office quickly to registerfor this activity and offer anysuggestions for a location, ifpossible. Thank you.This activity has been madepossible thanks to the financialcontribution of Schering.
Family weekend for familiesliving with inhibitors
We are planning the second familyweekend for peopleliving withinhibitors.The activity will take place fromOctober 14-16 and the location hasyet to be decided.Once again, we will be working incollaboration with Sylvie Lacroix,nurse coordinator from the QuebecReference Centre for People Livingwith Inhibitors and will be workingtogether to plan activities. Becauseof the deadline for reserving alocation, we will be contactingfamilies during the summer in orderto send out registration forms withall the details about the activity.
InternationalHemophilia DayEach year the CHSQ makes sure itis present at the Quebec NationalAssembly during a parliamentarysession sometime around the 17th
of April to commemorateInternational Hemophilia Day.This year, on April 14, the Deputiesreceived a button to commemoratethe event and the Minister of Health,Mr. Philippe Couillard as well asthe Official Opposition Health Critic,Ms. Louise Harel, rose to talk abouthemophilia.Ms. Harel also spoke about certainpreoccupations that we mentionedto her beforehand, notably our fearsof losing the expertise that has beenacquired by hemophilia treatmentcentres that could occur becauseof the decentralization of the budgetfor blood products and theirderivatives to designated hospitals.She also mentioned our request forcost of living indexation for theMulti-Provincial and TerritorialAssistance Program (MPTAP) forvictims from Quebec whocontracted HIV from a bloodtransfusion or blood product.Student Scholarship ProgramReminder: The deadline forapplications is July 31, 2005. Thosecandidates who are interested areasked to contact our office so thatwe can send you the admissioncriteria as well as an application
Grandparents who wish toparticipate in this activity may doso, on condition that they becomemembers and pay the registrationcosts and this, depending on thenumber of places available. We willplan a special workshop forgrandparents if there are enoughpresent.In order to be able to give parentsa break and allow them to take partin workshops, we will need the helpof a number of volunteers. If youare interested and would like toknow more about the type ofvolunteer work required during thisweekend, don’t hesitate to contactus.Registration fees for the weekendare the same as those for the CHSQfamily, weekend, that is, $50 peradult or for a friend of the family(with a maximum of one friend perfamily) and $25 per child under 18years of age.
Von Willebrand DiseaseAwareness Activity
Next autumn, thanks to the financialsupport of ZLB Behring, the CHSQwill be offering four awarenessworkshops about Von WillebrandDisease to various women’sorganizations (two in Montreal andtwo in Quebec City).We are looking for volunteers whowould be interested in attending atraining session in September tohelp give these workshops.It would be best to have peoplewho have VWD or who arehemophilia carriers, but anyonewho is at ease doing presentationsis welcome.Please call Aline at the office orcontact Patricia Stewart who’sresponsible for this working group,at [email protected] you. ∆
See you soon!
D uring the WFH congress inBangkok, Thai Buddhist masters,R. Pratanakul and Dr. P. Wasi, spokeof the healing effects of meditation,a practice common in the easternworld. Medical evidence continuesto add to the findings of thetherapeutic effects of meditationand how it offers important copingmechanisms for patients.While an integrated approach wasmaintained in traditional healingsystems in the East to include mind,body and spirit, by the 16th and 17th
centuries developments in thewestern world led to a separationof human spiritual or emotionaldimensions from the physical body,
and western medicine now dealsalmost exclusively with the physicaldimension of a person. Fixing orcuring an illness became a matterof science (i.e., technology) andtook precedence over, not a placebeside, healing of the mind andspirit.Many health care professionals inthe western world are now makinguse of the age-old techniques ofmeditation to supplement standardtreatments. It is being used to treatstress-related illness such as highblood pressure, migraines,insomnia and cancer. Even ifserious illness like AIDS and cancercannot be completely cured,meditation puts the sufferer incontrol, enabling him to cope withthe disease and the treatment andlessen the stress that affects aperson’s health, as well as theillness itself.Meditation is found to contributesignificantly to the empowermentof patients for self-healing. In recentstudies, subjects in a meditativestate showed increased levels ofserotonin, our “feel good” hormone.
Serotonin is an importantneurotransmitter and neuropeptidethat influences mood and behaviorin many ways. Meditation has alsobeen associated with increasedavailability of melatonin, derivedfrom serotonin, another importantneurotransmitter and neuropeptidethat influences mood and behavior.Melatonin has been linked toregulation of sleep, and earlyresearch indicates it may have anti-carcinogen and immune systemenhancing effects.Meditation has been associated withincreases in antibody titers toinfluenza vaccine, suggestingpotential linkages amongmeditation, positive emotionalstates and improved immunefunction. There has also been proofthat a physiological link amongmood, stress and hormones existsfor healing wounds.The session concluded with a ten-minute relaxation meditation ledby a Buddhist monk, a relaxing andenergizing break from the bustlingactivity of the Congress. ∆
References :1. Physical, mental, social, spiritual health. P. WASI,Mahidol University, Bangkok, Thailand; HaemophiliaVol. X, 20042. Meditation: A Buddhist way to heal mind and bodyP. Ratanakul; Mohidol University, Bangkok, Thailand:Haemophilia Vol. X, 20043. National Centre for Alternative and ComplementaryMedicine; http://nccam.nih.gov/health/backgrounds/mindbody.htm#meditation4. Pain – The Fifth Vital Sign, CHS publication ,www.hemophilia.ca
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
