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S u m m e r 2 0 0 5 V o l 4 0 N o 2w w w . h e m o p h i l i a . c a
S e r v i n g t h e B l e e d i n gD i s o r d e r s C o m m u n i t y
Hem philiaTODAY
ALSO INSIDE: NEWS UPDATE • MEDICAL NEWS • CHAPTER SPOTLIGHT • OUR STORIES • THE BLOOD FACTOR • GLOBAL PERSPECTIVE
Step by Step ProgramStep by Step Program OFF ON THE RIGHT FOOT
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H E M O P H I L I A T O D A Y S U M M E R 2 0 0 5
SUMMER 2005 • VOL 40 • NO 2Hemophilia Today
625 President Kennedy Avenue, Suite 505Montreal, Quebec H3A 1K2
www.hemophilia.caPhone: (514) 848-0503
Fax: (514) 848-9661Toll Free: 1(800)668-2686
Hemophilia Today is the official publication of the Canadian Hemophilia Society (CHS) and appears three times yearly.
The Canadian Hemophilia Society exists to improve the quality of lifefor all persons with hemophilia and other inherited bleeding disorders
and to find a cure.
The purpose of Hemophilia Today is to inform the hemophilia andbleeding disorders community about current news and relevant issues.
Publications and speakers may freely use the information containedherein, provided a credit line including the volume number of the
issue is given. Opinions expressed are those of the writers and do notnecessarily reflect the views of the CHS.
The CHS consults medical professionals before distributing anymedical information. However, the CHS does not practice medicine
and in no circumstances recommends particular treatments forspecific individuals. In all cases, it is recommended that individuals
consult a physician before pursuing any course of treatment.
Brand names of treatment products are provided for information only.They are not an endorsement of a particular product or company by
the writers or editors.
Hem philiaTODAY S e r v i n g t h e B l e e d i n g
D i s o r d e r s C o m m u n i t y
EDITORFrançois Laroche
PRESIDENTEric Stolte
EXECUTIVE DIRECTORStéphane Bordeleau
EDITORIAL COMMITTEEHélène Bourgaize
Clare CecchiniFrançois Laroche
David PagePatricia Stewart
CONTRIBUTING WRITERSStéphane Bourdeleau
Hélène BourgaizeMaureen Brownlow, RSW
Clare CecchiniKaren Christie, BscPTSophia Gocan, R.N.
François LarocheKoon Hung Luke, M.D.
David PageMan-Chiu Poon, M.D.
Claudie OuelletBruce Ritchie, M.D.
Jeff RicePatricia Stewart
Eric StolteRochelle Winikoff, M.D.
PRODUCTION COORDINATORDavid Page
PRODUCTION ASSISTANT AND FRENCH VERSION COORDINATOR
Hélène Bourgaize
GRAPHIC DESIGNPaul Rosenbaum
TRANSLATORSRoy Keys
Normand LatulippeMarie Préfontaine
Louis Tardif
PRINTINGImprimerie Gibraltar
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WE WOULD LIKE TO THANK THE FOLLOWING COMPANIES
WHO HAVE GENEROUSLY ACCEPTED TO PARTICIPATE IN
OUR NEW NATIONAL CORPORATE SPONSORSHIP PROGRAM
This program is intended for companies that sellpharmaceutical products for the treatment ofbleeding disorders. The participating corporationsaccept to donate an amount proportional to theirshare of the Canadian market without specificrestrictions or conditions. This creates a transparent,equitable and arms-length relationship. The NationalCorporate Sponsorship Program supports theCanadian Hemophilia Society to better serve familiesconfronted with a bleeding disorder.
In this way the pharmaceutical companies generouslycontribute to the well being of those who use theirproducts.
We would also like to thank our numerous donors –
individuals, corporations and foundations –
who each year express their confidence in us
by making substantial donations.
Thanks to all of these generous contributions, the CanadianHemophilia Society…
• Offers national programs of training, education and awareness
• Supports research into hemophilia and other bleeding disorders
• Produces educational publications, periodicals (such asHemophilia Today) and keeps up to date an Internet sitehttp://www.hemophilia.ca
• Interacts with stakeholders in the health care field to promotethe well being of all our families.
▼
CHSNATIONAL
CORPORATESPONSORSHIP
PROGRAM
CHSNATIONAL
CORPORATESPONSORSHIP
PROGRAM
BAXTER | BAYER | NOVO NORDISK | WYETH | ZLB BEHRING
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WORDFROM THEEDITOR
F r a n ç o i s L a r o c h e
In an important development in the tainted blood saga, on May 30, theCanadian Red Cross Society pleaded guilty to reduced charges of distributingblood products it knew were contaminated.
The sentence, a $5,000 fine, the maximum penalty for an infraction of theFood and Drug Act, is unlikely to satisfy victims any more than the $1.5 millionpaid into a scholarship fund for victims and the creation of a foundation forresearch into medical errors. (By comparison, the Red Cross has already paid $70million in compensation.)
What is satisfying, at least in my opinion, is that for the first time, the RedCross is admitting its responsibility and wrongdoing in what many are calling theworst tragedy that our public health system has ever experienced.
Small consolation, you might say. Perhaps, except that this admission ofresponsibility had to be made in order to apply salve to the still open sores of manyfamilies of victims or victims themselves who have lost either someone dear ortheir health in this affair, which has been dragging on for almost 20 years.
Perhaps also because it has paved the way for court appearances by otherplayers who were front and centre in the 1980s against whom charges are pending.However, the fact that the Red Cross was able to plea bargain must not mean thatindividuals and private companies also facing criminal charges whose cases are stillbefore the courts should be able to do the same.
It is a question of public trust, especially the victims’ and their families’ trustin our legal institutions.
A legitimate question may nevertheless come to mind: “Can we now counton a truly safe blood system in this country?” In other words, “Have we learnedfrom past mistakes?” I would have a tendency to answer both of these questions inthe affirmative.
After the Commission of Inquiry on the Blood System in Canada chaired byJustice Horace Krever filed its report, a number of measures were taken, as youknow. From the creation of Canadian Blood Services and Héma-Québec to theestablishment of exclusion criteria and rigorous testing of each blood donation,the setting up of the Blood-borne Pathogens Division of Health Canada, the Comitéd’hémovigilance in Québec, the Patient Notification System, and much, much more.The result is that the chances of another tragedy happening are very slim.
Not to mention the fact that most Canadian hemophiliacs now injectrecombinant products created by genetic engineering, making the possibility oftransmitting pathogens for all practical purposes nil.
Of course, given that individuals suffering from coagulation disorders cannotall count on recombinant products to treat bleeding, that blood and blood by-products are biological products, and that not all blood-borne pathogens areknown, a risk, however small, of transmission of infectious agents is alwaysinherent in any transfusion of blood products.
But in my view, this should not prevent us from promoting blood donorclinics, as you may already be doing—especially in the summer period, the timeof year when the demand for blood products is most acute. In so doing, we areacting as good citizens of our society and community, acutely aware of the needfor blood products.
WORD FROM THE EDITOR ............................3
PRESIDENT’S MESSAGE ..............................4
FROM THE EXECUTIVE DIRECTOR ..................4
STEP BY STEP PROGRAM LAUNCHED ............5
NEWS UPDATE ..........................................5
NEW PUBLICATIONS ................................10
CHAPTER SPOTLIGHT ................................11
MEDICAL NEWS
Pain–the Fifth Vital Sign: Complementary andAlternative Approaches to Pain Management ....13
Introducing… Canadian Physiotherapists in Hemophilia Care ..................................15
Canadian Physiotherapists in Hemophilia Care Workshop ......................................16
Hepatitis C Press Review ........................17
Self-infusion Training at Age 3!..................18
OUR STORIESClaudie Ouellet ......................................18
THE BLOOD FACTOR The Blood-Borne Pathogens SurveillanceProject ..................................................19
Profile – Dr. Bruce Ritchie ........................20
The Press Review ....................................21
THE FEMALE FACTORTreatment Options for Menorrhagia ..........22
GLOBAL PERSPECTIVE Hemophilia Care in China: New Strategies and Opportunities in 2005 and Beyond ......23
HEMOPHILIA 2006 WORLD CONGRESSCall for Abstracts ....................................24
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IN THIS ISSUE
…in my view
SUMMER 2005 • VOL 40 • NO 2
COVER: The Step by Step Program Parents Workshop and launch, held May 27 inCharlottetown, PEI.
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Milestones
PRESIDENT’SMESSAGEEric Stolte
FROM THEEXECUTIVE DIRECTORStéphane Bordeleau
MILESTONES: stone markers set up on a roadside to indicate the distancein miles from a given point.
During the past several years, we’ve celebrated various milestones inour history, both nationally and provincially. I was privileged to chatwith Corporal Colin Craig, founder of the PEI chapter, and his familyat the Canadian Hemophilia Society Annual General Meetingcelebrating the PEI Chapter’s 40th anniversary. To see a hall filled withpeople who benefit from the Chapter’s work and to hear about itshumble beginnings was deeply rewarding.
Looking back, former milestones remind us of significantdestinations on our journey. The CHS has recently placed twomilestones on this road. Years from now, I believe we’ll look back withjoy and gratitude for the hard work so many have devoted to twocurrent milestones.
Our Policy on Relationships with Companies in the PharmaceuticalIndustry marks a milestone on the road to open, equitable andtransparent relationships with our pharmaceutical sponsors. Wesincerely appreciate their strong support of the CHS and acknowledgethat without this support, we would not enjoy the current number andquality of programs.
Such strong support, however, can also give the appearance that weare beholden to our sponsors. When advocating for the best care, ourvoice can be discounted if we are perceived to be compromised by suchsupport. Our pharmaceutical relations policy helps ensure that theirsupport is never linked to undue influence or even the appearance ofsuch influence.
Negotiating such territory can be a challenge. The CHS owes a debtof gratitude to David Page, Stephane Bordeleau and so many otherswho put in the hours it took to put this policy together. Along with theNational Corporate Sponsorship Program, this policy will also helpensure the continuation of our sponsors’ generous support.
…Another extremely significant milestone is our nation-wide
Comprehensive Fundraising Program. Countless hours of work ofmany volunteers and staff over the past two years have resulted in aprogram that holds the hope and promise of a future characterized byan expanding and diverse funding base. My special thanks to TomAlloway and Daniel Lapointe as well as Terry and Wanda Slobodian fortheir leadership and extra work in initiating and contributing to theearly stages of this project, and to Stéphane Bordeleau and Joyce Gouinfor pursuing the work. The strength we achieve through the successfulimplementation of this program will enable continued vigilance as wecare and watch out for one another.
Now comes the hard part – making it work! I’m confident that, as avolunteer organization that has changed Canada’s blood system, wehave the inherent willpower, determination and commitment to makethis program fruitful. I trust that each of you reading this will carefullyconsider the vital role you can play.
Now is not the time for modest action or sitting back and resting onour achievements. There are very real threats out there that couldcompromise the care and health of a new generation of people withbleeding disorders. We must all play our part so that when we are goneand others look back on this milestone, they will have the same joy wehave – benefiting from a legacy of hard work and committed effort.
THE CANADIAN HEMOPHILIA SOCIETY is a remarkableorganization. Whether in its research programs, its support and
education programs, its role in advocating for the best care for thebleeding disorders community, its efforts to create a safer Canadian bloodsystem, or its involvement in the global hemophilia community, the CHS demonstrates the highest level of commitment. Other health organi-zations may be much larger; however, the CHS, with its more limitedfinancial and human resources, achieves as much or more. Why is that?
People are what make the CHS so special. And the CHS leaders are,in my experience, unique. Members of the national Board of Directorswith whom I work have extensive expertise. They know the history ofthe CHS and understand every aspect of the programs and services wedeliver. They generously share their time, energy and skills. They alsoact as the main channel for information from one level of theorganization to another. They are the core reason why CHS is today sostrong and well-respected.
I would like to take this opportunity to mention that one of them,Sheila Comerford, has just finished her term on the board and theExecutive Committee. She was involved for almost 10 years in aleadership capacity and on our Blood Safety and Supply Committee.Her knowledge and expertise, her leadership and devotion wereoutstanding. Sheila is a good example of this impressive group ofCHS leaders. She contributed to our organization in a major way andwe will miss her very much.
Hundreds of people are also involved in the organization at thechapter and regional levels. They are vital for the CHS as they are thefoundation on which our house stands. The chapters and the regionsprovide essential support to our community and do so with limitedresources. Volunteers are vital in the success of this work. Over the pastseveral years, the different parts of our organization have become moreclosely linked together. Just as one volunteer’s achievements are linkedto many other volunteers’ efforts, our regions, chapters and nationallevels depend on each other. Our achievements are always theachievements of a group. The CHS is a people organization, acommunity of citizens sharing a rare and difficult condition, a groupdoing what it needs to overcome problems.
The CHS has taken a new direction lately. It will put even moreemphasis on its people, thinking not only about the final outcomes but also about the people behind them. The Executive Committee hasapproved a recommendation to give new responsibilities to HélèneBourgaize. As the new National Director of Volunteer Developmentand Human Resources, she will play a key role in making sure all ofthe people giving so much to the CHS have everything they need tocontribute positively, happily and effectively.
For your information, Hélène just celebrated her 20th anniversarywith the CHS; outstanding longevity for anyone in today’s workenvironment. She says she has always felt appreciated by the peopleinvolved in the CHS. “This is what really motivates me every day.”
Working for the CHS is more than a job; staff become emotionallyinvolved. We want to make a difference. As part of the team, we want to serve the mission of our organization and try to respond to all theneeds of our volunteers. Hélène Bourgaize is just one of many staffwho are part of this group of people very much involved in thesuccesses of the CHS. People are really what make this organization.
People
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To learn more about the Step by Step Program, please contactthe CHS or visit www.hemophilia.ca/stepbystep/en
“Thank you so much for the opportunity to travel to PEI andparticipate in the Step by Step Program. I am extremely excitedabout the potential of this program, and how it will help parentscope with hemophilia.”
“I have had a real eye opening weekend. This was my firstNational level meeting and it was great. Congratulations to all for agreat job on this program!”
“Thank you for everything this weekend! The experience waspositive and I look forward to future participation.”
“I was thrilled to be able to take part in the Step by Step ParentWorkshop. I hope to be able to take part in more meetings andworkshops in the future.”
The Step by Step Program is designed to provide parentswith information and support during the different stages or“steps” of their child’s development. Initially, parents will be
welcomed into the bleeding disorderscommunity by receiving Info Kits,information packages that containeducational material, information about the
CHS and useful items offered to the family by the HTC nursecoordinator at the time of diagnosis. Follow-up packages will bepresented after one year and before the child starts school.
Following the conclusion of the workshops, all participantsattended the official launch of the program.
Everyone then followed the footsteps to a reception where theyreceived a Step by Step sunhat and a glass of wine to toast the newprogram’s success.
A new section of the CHS website has been developed for theStep by Step Program at www.hemophilia.ca/stepbystep/enSome of the features of the website are:
PARENT TO PARENT - an online programthat allows parents to connect with anotherparent to share experiences and strategies.
FORUM - an online bulletin board where parentscan read about specific topics related to raising a childwith a bleeding disorder and share experiences, tipsand success stories.
Just the Guys - a place where a dad can learnmore about how to take an active role in thecare of his child with a bleeding disorder.
Left to right: Themembers of the Stepby Step ParentsProgram SteeringCommittee: ClareCecchini, PamWilton, MylèneD’Fana, BrianWhitehead, JulieSerrador and ClaraPenner.
ParentParent
TO
ForumJust
theGuys
N FOK TS
Left to right: EricStolte, CHSPresident; ClareCecchini, CHSProgram Coordin-ator; Alan Birrelland RenaBatistella of BayerCanada, at thelaunch of the Stepby Step Program.
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“I was thrilled to be able to take
part in the Step by Step
Parent Workshop.I hope to be ableto take part inmore meetings
and workshops inthe future.”The Canadian Hemophilia
Society, with the support of
Bayer Inc., has initiated an
exciting new program for parents of children
with bleeding disorders, called Step by Step. The
program was developed with input from hemophilia treatment
centre (HTC) health care providers and parents of young children
with bleeding disorders from across the country. It was launched
on May 27, 2005 in conjunction with the CHS Annual General
Meeting in Charlottetown, PEI.
Parents were introduced to the new program at the Step by
Step Workshop held during the day. One parent and one staff
member from each province were funded to attend the workshop
with the goal of gaining knowledge and skills to enable them to
implement the program in their regions. Many chapters also
funded additional parents to attend so that a total of 45 people
participated in the workshop.. . .
Supported by BAYER
StepbyStepA Canadian Hemophilia Society Program forParents of Children with Bleeding Disorders
NEWS UPDATE
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PresidentEric Stolte
Past PresidentTom Alloway, Ph.D.
Vice PresidentsMike BeckRazek SyrianiPam Wilton
TreasurerNorman Locke
SecretaryJames Kreppner, LL.B
Front row: Colleen Barrett, Clara Penner, Martin Kulczyk, Mylène D’Fana, Pam Wilton.Middle row: Betty Anne Hines, Stéphane Bordeleau, CHS Executive Director, Mike Beck, TonyNiksic, Heather Moller, James Kreppner, Norman Locke. Back row: Craig Upshaw, Bob Steffens,Daryl McCarvill, Eric Stolte, Steven Bardini, Razek Syriani, John Plater. Missing from photo:Tom Alloway, Mike Watt, Dominick Eden, Christine Keilback and Bruce Ritchie.
� CHS BOARD OF DIRECTORS FOR 2005 – 2006
DirectorsSteven BardiniColleen BarrettMylène D’FanaDominick EdenBetty Anne HinesChristine KeilbackMartin KulczykDaryl McCarvillTony NiksicClara PennerJohn PlaterBob SteffensCraig UpshawMike Watt
The latest in hepatitis CDr. Kevork Peltekian, hepatologist, fromthe Queen Elizabeth II Health SciencesCentre in Halifax, Nova Scotia, giving apresentation on the effects of hepatitis C onthe lives of patients infected with the virus(HCV) and its treatment.
The first Board of Directors Meeting for2005-2006 was held on May 28 and 29 inCharlottetown, PEI. The members of theBoard of Directors elected for the comingyear are:
A fact of life of any organization is the comingand going of various board and executivecommittee members. This year two key executivecommittee members have chosen not to renewtheir tenure. We would like to acknow-ledge and thank John Plater and SheilaComerford for their hard work and dedicationon the CHS Executive Committee over the years.
Passport to Well-Being:Roadmap for Managing PainMaureen Brownlow, Co-chair of the CHS PainManagement Working Group and socialworker at the hemophilia treatment centre at theIWK Health Centre in Halifax, Nova Scotia,facilitated a session on pain management. Inaddition to a presentation on availableresources, participants heard how four peoplewith bleeding disorders have found differentstrategies to manage pain. Read the lastinstallment of Hemophilia Today’s series Pain –The Fifth Vital Sign: Complementary andAlternative Approaches to Pain Managementby Sophia Gocan on page 13.
Highlights of the
Annual GeneralMeeting
Held in PrinceEdward Island,
May 27- 29, 2005
MSAC Representative Bruce Ritchie, M.D.
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CHS Research 60 MinutesIn a technological first for the CHS, andthanks to support from the CanadianInstitutes of Health Research, simultaneousbroadcasts occurred between the CHSAnnual General Meeting in Charlottetown,PEI, and the meeting of the health careproviders in Hamilton, Ontario. Fourpresentations on the latest research inbleeding disorders were made: Dr. DavidLillicrap, hemophilia gene therapy; Dr.Victor Blanchette, prophylaxis in Canada;Dr. Georges-Etienne Rivard, inhibitors; andDr. Bruce Ritchie, the Blood-Borne PathogenSurveillance Project (see page 19). Watch thenext issue of Hemophilia Today for moreinformation on viewing these excellentrésumés of current research.
PEI TrailblazersThe Canadian Hemophilia Society was inPrince Edward Island to help Islanderscelebrate the Chapter’s 40th anniversary ofservice to people with bleeding disorders.Featured in this photograph are the foundersof the PEI Chapter, Mary and Colin Craig,Sr. (left). They are with their grand-daughters (centre), and JoAnn and ColinCraig, Jr. (right). Those who attended fromchapters across Canada will not soon forgetthe welcome extended by the members of thePEI Chapter at the Saturday eveningbanquet… not to mention the fresh lobster.
On sale the night of the PEI banquet was a beautiful a handmade quilt, donated to the PEIChapter by a women’s church group in Newfoundland. On June 30, the draw was madeand the winner was Gerri Herring from Murray Harbour, PEI. Almost $700 was raised forthe Chapter. Thanks to everyone who sold and purchased tickets, both near and far! Staytuned for the Chapter’s next raffle of a Nascar Adirondack lawn chair later in the year.
� AN INTRODUCTION TO THE NEW DIRECTOR OF VOLUNTEERDEVELOPMENT ANDHUMAN RESOURCES
Hélène Bourgaize
As the new Director of VolunteerDevelopment and Human Resources mygoal will be to establish an on-goingvolunteer development program toprovide training and skills buildingopportunities on an annual basis.
As a first step, a workshop onvolunteer recruitment and retention washeld in Charlottetown on May 28 as partof the Annual General Meeting activities.We felt that offering this kind ofworkshop at this time was essential forthe CHS, as recruiting new volunteerswill be crucial to secure the long termstability of the entire organization in thecoming years.
This workshop was led by Ms.Veronica McNeil, owner of a consultantfirm in Halifax who specializes in trainingand education in board governance,organizational structure, strategicplanning and volunteer management.
Participants were able to learn aboutthe trends in the voluntary sector inCanada, tips on how to motivatevolunteers, and exchange on strategies forrecruiting and retaining them. This two-hour workshop made us realize howimportant it is for an organization such asours to recognize its volunteers, and thatoften our current volunteers are the bestrecruiters for new volunteers. Formembers who were not present inCharlottetown and who are interested inlearning more about recruiting andretaining volunteers for their chapters,please feel free to contact me [email protected] and I will bepleased to provide you with a copy of theworkbook distributed to all participants atthe workshop.
The organization has still a long way togo in implementing a volunteerdevelopment program; however, we aremotivated and excited by this newopportunity and ready to do the workthat has to be done. In the comingmonths we will be putting in place avolunteer development task force whichwill work with us in finding ways ourorganization can help our chapters torecruit, train, retain and recognize ourmust precious resource: our volunteers.
A special presentation wasmade to Frank Bott (left),
retiring trustee of the HemophiliaResearch Million Dollar Club(HRMDC) by John Plater (centre) andJames Kreppner (right), members ofthe CHS Board of Directors. In 2000,Frank Bott, as Chair of the HRMDC,spearheaded an ambitious fundraisingcampaign to increase the combinedendowment from $1,000,000 to$1,600,000 by the end of 2006 throughthe offering of a new series of VotingMemberships. Thanks to Frank’scommitment and determination, the”impossible dream” of attaining$1,600,000 in combined endowmentwas reached by the end of 2004.
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� HEPATITIS CCOMPENSATION FORTHOSE INFECTED BEFORE1986, AFTER 1990, STILLNOT A DONE DEAL!
On April 20, 2005, all members presentin the House of Commons voted in favourof a motion that, “…continues to urgethe government to extend compensation toall those who contracted Hepatitis C fromtainted blood…” . MP’s also called on thefederal government to do so immediately.
The vote, highly symbolic in nature, isnon-binding on the part of the federalgovernment, currently in a minoritysituation in The House, and led by theLiberal Party of Canada.
This means that, despite the unanimoussupport of MP’s from all parties – the governing Liberals, as well as theConservatives, Bloc and New Democrats inopposition – the status quo remains. Therehas still been no clear indication on the
Twenty Years of Dedication!
On May 6, 2005, Hélène Bourgaize, celebrated her 20th anniversary as an employeeof the CHS. Hélène began working for the CHS in 1985 and shared her time betweenthe Quebec Chapter and the National Office before making the change full-time toNational CHS in 1988. Hélène has worked under 8 different Executive Directors andin 3 different locations and has recently been appointed Director of VolunteerDevelopment and Human Resources.
Two special events were held to mark the occasion. On May 6, the Montreal stafforganized a surprise party for Hélène at the office to which former staff were invited.
And, on May 28, at the PEI Chapter’s 40th Anniversary Banquet in Charlottetown,John Plater, on behalf of CHS volunteers, paid tribute and hosted a slide showfeaturing Hélène over the past twenty years. Eric Stolte, CHS President, presentedHélène with a gift and souvenir scrapbook to thank her on behalf of the Board forher twenty years of exceptional devotion and dedication to the Society.
� BIO-SET® TO BEINTRODUCED IN CANADA
David Page
In the coming months, Bayer Inc. willintroduce in Canada BIO-SET®, a needle-less reconstitution device for its Kogenate®FS recombinant factor VIII product. Thedevice was approved for use by HealthCanada in late 2004. (See the Fall 2004issue of Hemophilia Today.)
According to a study, financed by Bayerand published in the Journal of OutcomesResearch, “Compared with currently avail-able systems, use of BIO-SET involves noexposure to needles during the reconstitu-tion process, and minimal risk of contami-nation with the medicinal product duringreconstitution owing to the special vacuumseal and handling of fewer componentparts by the user.”
The study, involving 161 caregivers,nurses and patients, compared BIO-SETwith two conventional reconstitutiondevices. The investigators concluded, “The
part of the Government as to whenpotential compensation recipients fromoutside of the 86-90 timeframe may beginto submit claims.
Earlier in the day, a verbal exchangetook place between federal Health MinisterUjjal Dosanjh and one of his Liberalcolleagues, in which Dosanjh indicatedthat:
“We are committed to thediscussions launched in November to explore all available options forproviding compensation. However,while we are supporting the motion,we recognize the limitations and flawsof that motion. It must be made clearthat compensation can only be madeonce the discussions underway haveconcluded. Everyone is working in goodfaith as fast as they can to reach asuccessful outcome.”
As it stands, discussions are currentlyunderway between: representatives fromthe federal government, lawyers
representing those people already coveredunder the 1986-1990 Agreement andlawyers representing people excluded fromthe 86-90 plan, in efforts to determine themost reasonable way to extendcompensation.
At the same time, an actuarial study isbeing conducted to determine the amountof money that remains in surplus in the86-90 fund. It is thought that this moneymay potentially be used to assist thoseoutside of the 86-90 window. The studywas to be completed by June 2005;however, as of the writing of this article(July 4, 2005), the actuarial study has notyet been completed.
The position of the CHS remains thesame: to protect the monies already setaside for claimants accepted into the 86-90plan, and to provide equal compensationto those outside of the 86-90 period. Thereare several ways that compensation couldbe extended to those excluded, includingusing surplus funds from the 86-90 plan,and having the government guarantee totop up any shortfall. It would be likely thata parallel fund would have to be set up forthe new claimants.
Representatives from the CanadianHemophilia Society will continue to followthis issue very closely and provide updateson the CHS website - www.hemophilia.ca
Hélène receives her souvenirscrapbook from CHS President,Eric Stolte, at the CHS AnnualGeneral Meeting inCharlottetown.
Some of Hélène's colleagues over the last 20 years. Standing (left to right): Isabelle Fournié, Serge Séguin, Stéphane Bordeleau,Stéphane Lemieux, Geneviève Beauregard, Aline Ostrowski,Daniel Lapointe, Robert St-Pierre, Joyce Gouin, Clare Cecchini,Jeff Rice, Christiane Brossoit, Danny Collins. Seated: David Page,Hélène Bourgaize, Paul Rosenbaum, Normand Latulippe.
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� RED CROSS PLEADSGUILTY
On Monday, May 30, the Canadian RedCross Society – distributors of blood andblood products in the 1980s that weretainted with the human immunodeficiencyvirus (HIV) and the hepatitis C virus(HCV), entered a plea of guilty to anoffence under section 8 of the Food andDrugs Act, a federal statute, on anindictment filed in the Superior Court ofJustice at Hamilton, Ontario.
Charges against the Red Cross fordistributing tainted blood between 1983and 1990 came in 2002 after thousands ofCanadians became infected with HIV andHCV from tainted blood transfusions.
As a result of the guilty plea andpublic apology, both defense and Crownlawyers have agreed the Red Cross shouldpay a $5,000 fine, the maximum fine foran offence under this Act, and make a$1.5 million dollar payment to theUniversity of Ottawa, half of which will providescholarships for tainted blood victimsand their families, with the other halfgoing for the creation of a nationalendowment for research into medicalerrors.
On Thursday, June 30 in Hamilton,Ontario, Mr. Justice James Kent ofOntario Superior Court accepted the pleabargain.
outcomes of this preference study suggestthat the primary benefits of this newreconstitution device are speed of reconsti-tution and convenience, which translateinto easier, time-saving infusions.”
Rena Batistella of Bayer Inc. in Canadasaid that the devices will first be intro-duced to accompany the 500 and 1000 IUvial sizes and later with the 250 IU vialsizes. “We have done extensive field testingwith the device,” she said, “and the reactionhas been extremely favourable.Nevertheless, we will keep the formerreconstitution system on hand in case thereare individuals who, for whatever reason,prefer it.”
Nurse coordinators in Canada’s 24hemophilia treatment centres have alreadyreceived training with the new device.
Reference: Butler et al, Journal of OutcomeResearch 2004; 8; 63-78.
Each time you or a family member participatesin a Passport to Well-Being activity you areentitled to have your passport stamped with avisa. Once you have collected a minimum of
three visas, you are eligible to have your nameentered in a draw for the following great prizes:
1st PRIZE Roundtrip airplane tickets for 2 people to any Canadian destination........................ (1 winner)
2nd PRIZE 2 piece set of luggage .................................. (2 winners)
3rd PRIZE Backpack .................................................... (5 winners)
To participate in the PPaassssppoorrtt ttoo PPrriizzeess DDrraaww, complete the entry formbelow and return it, along with a photocopy of your stamped Passportpages to CHS at the address below. Entry forms are also available on theCHS website at www.hemophilia.ca (go to CHS Programs, Passport to Well-being Program). Please note that only one entry per family will be accept-ed. AAllll eennttrriieess mmuusstt bbee rreecceeiivveedd bbyy NNoovveemmbbeerr 1155,, 22000055.. The winners willbe announced in December, 2005 on the CHS website.
Canadian Hemophilia Society625 President Kennedy, Suite 505
Montreal, QuebecH3A 1K2
P A S S P O R T T O P R I Z E S E N T R Y F O R M F O R D R A W
Name:
Address: Prov.: Postal Code
Tel: Bus: Res:
Email:
Chapter:
VViissaass (Please indicate the Passport to Well Being Activities you or a family member have participated in and attach photocopies of the stamped passport pages with your entry form. A minimum of 3 visas must be collected in order to enter the draw)
Homecare: The Road to Independence Destination Fitness
Roadmap for Managing Pain Charting Your Course
PASSPORTto PRIZES!
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C a n a d i a n H e m o p h i l i a S o c i e t y
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New colours to match the CHS logo. Andon the front page to facilitate navigation,logos of some of our prominent programs(Step by Step, Passport to Well Being, Careuntil Cure, the Network of Rare BloodDisorder Organizations).http://www.hemophilia.ca/en/index.html
And lots of new content. For example:
The Step by Step Program for Parentshttp://www.hemophilia.ca/stepbystep/en/index.php
The 2004 CHS Annual Reporthttp://www.hemophilia.ca/en/1.5.php
The CHS Pain Management Programhttp://www.hemophilia.ca/en/11.1.php
A selection of hepatitis C research abstractsand newshttp://www.hemophilia.ca/en/5.8.php
The latest in CHS educational materialshttp://www.hemophilia.ca/en/13.1.php
A way of donating on-line to the CHSthrough CanadaHelps.org. Find the linkat…http://www.hemophilia.ca/en/1.4.php#4
w w w . h e m o p h i l i a . c a
New resource on managing pain
CHS is very pleased to announce thepublication of a new resource entitled,Pain – The Fifth Vital Sign: A Resource forPeople with Bleeding Disorders.
“It takes a village to raise a child.” Thebleeding disorder community in Canada issuch a village. In the late ‘90s, a smallgroup of men from various areas ofCanada were at a CHS meeting and beganto speak about the pain that they’d beensuffering for years, and the variousattempts they’d made to get relief. CHSvolunteers were listening and themovement began. From the panel atMont-Tremblant in ‘99, where three menshared their struggles with pain, joined bya pain specialist and a physiotherapist, aworking group was formed. This grouptook the valuable insights learned at Mont-Tremblant, added to them through a survey ofyouth and adults in a number of clinics across the country, and began a process whichwould result in increased understanding of appropriate methods of assessment andtreatment of pain in people of all ages, and would increase the ability of persons withbleeding disorders and their families to advocate for effective pain management.
Many people have been involved in this project: those who originally raised the topic,individuals who contributed their experiences with pain by participating in a survey or bytelling their stories, professionals in the health care community who acted as contributors tothe book and, finally, the members of the working group. The dedication of this team in theplanning of the project, the writing and editing of chapters and the selection of theillustrations has been the fuel to the entire effort.
The CHS would like to thank Wyeth for providing the funding, and the many volunteersand health care professionals who volunteered their time and expertise to make Pain – TheFifth Vital Sign something that we can all be proud of but, more importantly, a resource thatwill help many people in the bleeding disorders community.
Copies of the new resource have been distributed to all hemophilia treatment centresand CHS Chapters and is also available in PDF format on the CHS website(http://www.hemophilia.ca/en/13.1.php). Additional copies may also be ordered bycontacting the CHS office.
VWD educational book for kids Finding a lack of educational materials available for children diagnosed with von
Willebrand Disease, Susan Zappa, a hemophilia treatment centre nurse from the U.S.,worked with medical centres in Texas and Louisiana to develop a tool that would allowchildren to easily explain this problem to their friends and classmates. Funded by ZLBBehring, interviews were done with children with von Willebrand Disease from 7 to 12 years of age to find out exactly what they knew about the disorder, and what they wanted to know. The personal comprehension of each child varied greatly and their need forinformation ranged from understanding the mechanisms of bleeding to the heredity of thisdisorder. As a result of this survey, a book called Rafting Rescue! An Adventure at CampCascade was published. This adventure helps the characters realize that they possess skillsthat include taking care of injuries, finding ways to overcome fear, assessing and usingsupplies carefully and caring for each other. Children with other bleeding disorders are also characters in the book. To receive a copy, you can contact Susan Zappa at:[email protected]. There are plans to write a sequel about VWD for younger and older age groups.
NEW PUBLICATIONS
A Canadian Hemophilia SocietyProgram for Parents of Children with
Bleeding DisordersSupported by BAYER
� WHAT’S NEW ON THE CHSWEB SITE?
StepbyStep
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N E W F O U N D L A N D
With the message that theNewfoundland andLabrador Chapter of theCanadian HemophiliaSociety is here to help, adsappeared in the April 17weekly editions of sixteennewspapers throughout theisland and Labrador. Thesame message was broadcaston all of the community cable channels inrecognition of World Hemophilia Day.Deanna Stokes interviewed Dr. Mary-Frances Scully, hematologist, for an articlein The Telegram that highlighted ongoingresearch on the clinical impact of mildhemophilia. At Lewisporte Academy, seven-year-old Jeffrey Snow encouraged hisschoolmates to learn more abouthemophilia. He spoke to his grade twoclass about how hemophilia affects himand set up an informative display. Theentire school participated in a ‘hat day’fundraiser and the money raised will go tothe Chapter’s scholarship fund. Jeffrey andhis mom, Colleen Barrett, were featured intheir local newspaper.
S A S K AT C H E WA N
Hemophilia Saskatchewan held a steaknight fundraiser on Saturday, April 16 atSylvester’s Bar & Grill, in Saskatoon.Tickets were $12, and the evening featuredvarious door prizes, including a stainedglass “Memorabilia” rose by Lynne Pratt.The CHS presentation, The History of theTreatment of Bleeding Disorders in Canada,was used in order to acquaint attendeeswith the history of hemophilia care inCanada, but also to point out that much ofthe rest of the world does not yet haveadequate care. Approximately 90 peopleattended, including some people whoresponded to the promotionaladvertisements who had not beenpreviously involved in the chapter cause.The evening raised $650 for HemophiliaSaskatchewan.
H E M O P H I L I A T O D A Y S U M M E R 2 0 0 5 11
A L B E R TA
Southern Alberta Region
The Southern Alberta Region held itsannual World Hemophilia Daypresentation at the Alberta Children’sHospital in Calgary. The display was heldon Friday April 15. A number of CHSposters, pamphlets, and other educationaltools were distributed to the public alongwith educational material provided by theclinic nurses. As in past years, a local TVmorning program reported on the event.
M A N I T O B A
Once again, the Canadian HemophiliaSociety, Manitoba Chapter (CHS-MC) andCanadian Blood Services (CBS) held ablood donor clinic together on Monday,April 18, 2005. This year’s clinic coincidedwith World Hemophilia Day, a day onwhich bleeding disorders awareness ispromoted throughout the world.Volunteers manned an information table atthe clinic and the event received favourablemedia coverage.
As members of CBS’s “Partners 4 Pints”program, the Chapter is committed torecruiting donors not only on this clinicday but throughout the year as well. Manyfriends of the Manitoba Chapter havebecome dedicated blood donors and keensupporters of its partnership with CBS.“I have donated blood 5 times since Chriscalled me…I am doing this for your kids and
for anybody else who may need the supply,”said Steve B to Christine Keilback, ChapterPresident.
CHS-MC is very proud of its successfulpartnership with CBS and looks forward tobuilding on its successes.
Q U E B E C
World Hemophilia Day – Quebec Chapter
Every year around April 17, the SCHQsends a delegation to the Quebec NationalAssembly for a session in which WorldHemophilia Day is commemorated. OnApril 14 this year, Members of the NationalAssembly were given badges with a motifdepicting the event, and Health MinisterPhilippe Couillard and the officialopposition health critic, Louise Harel,tabled motions without notice addressingthe problem of hemophilia. Ms. Harel alsocalled attention to certain concerns we hadexpressed to her earlier, in particular ourfear of a loss of expertise in hemophiliatreatment centres resulting fromdecentralization of budgets for bloodproducts and their substitutes todesignated hospitals, and our demand thatthe Multi Provincial-Territorial AssistancePlan (MPTAP) for victims in Quebec whocontracted HIV as a result of a blood orblood product transfusion be indexed tothe cost of living.
H E M O P H I L I A O N TA R I O
Toronto and Central Ontario Region
The Toronto and Central Ontario Region(TCOR) celebrated WORLDHEMOPHILIA DAY on April 17 at the AirCanada Centre where thousands of Raptorfans were made aware of bleedingdisorders. The Hemophilia Ontario logowas displayed on the score board prior tothe game, and volunteers were stationed ata booth handing out World HemophiliaDay magnets along with information onhemophilia and von Willebrand disease.What a great way to raise awareness aboutbleeding disorders!
c h a p t e r s p o t l i g h t
CHS Chapters and Regions Across the CountryCelebrate World Hemophilia DayCHAPTER
SPOTLIGHT
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If your child was recently diagnosed in a hemophilia treatmentcentre, the nurse coordinator probably gave you an It’s a Boykit with a copy of All About Hemophilia: A Guide for Families or
the old blue binder, Hemophilia in Perspective. If the problem wasvon Willebrand disease, you received All about von WillebrandDisease. This package included kneepads, information about theCHS and how to get in touch with your local chapter. This kit wasconceived by the National Program Committee but is used byChapters to welcome new parents. In 2005, the information kits fornew parents have been updated as part of the new Step by StepParent Program and will soon be available for distribution atclinics. This is an example of the combined efforts of the Nationaland Chapter levels working together to serve the bleeding disorderscommunity.
The CHS National Program Committee works on the creationand development of educational materials and models of supportactivities for people living with a bleeding disorder. The provincialchapters make use of this material to offer services and programsto their members.
SUPPORT ACTIVITIES AND EDUCATIONAL MATERIALS
The CHS National Program Committee develops much of theeducational material that you receive. This Committee is made upof representatives from across the country who identify the needsof the bleeding disorders community. National staff work withvolunteers from both the patient and medical communities fromacross Canada to form working groups to develop the original ideainto a program. For example, problems people had when visitingthe emergency room led to the recent ER Program and resourcessuch as the Factor First cards and the guidebook, The ER: Prepare toSucceed. Educational documents such as All About Hemophilia: AGuide for Families and Pain, the Fifth Vital Sign, or programs suchas the von Willebrand Disease Awareness Campaign were developednationally. All of these programs and documents are available tothe chapters, along with help on using them.
Over the years, the National CHS has organized a number ofworkshops and conferences covering topics for parents of childrenwith hemophilia, families living with inhibitors, HIV issues,hepatitis C issues and women’s issues, bringing together peopleinvolved in hemophilia comprehensive care, from patients todoctors. The goal of these activities is to have key people from eachprovincial chapter participate in the workshop or conference andtake back what they’ve learned to share with their provincialorganizations.
The CHS often develops a workshop model, in the form of abinder with written information that may also be available on CD,slides, overheads or slide presentations. The provincial chapter can
CHS and its Chapters Programs: Who does what?
Patricia StewartMember, National CHS and Quebec Chapter Program Committees
then use this model to transfer the knowledge to its own membersduring local activities such as family weekends. Examples ofworkshop models include the Passport to Well Being Program andthe Community Education Kit on Women and VWD.
COMMUNICATIONS
Hemophilia Today, the CHS newsmagazine published threetimes a year, covers national and international news, medical news,research, news about factor concentrates, items of psychosocialinterest for all, and special Chapter activities. Each provincialchapter sends a list of its members to the CHS office so that theirmembers will receive Hemophilia Today free of charge. Mostprovincial chapters have their own newsletter as well, which willusually cover items of more local interest including activities,fundraising and local governance.
The CHS is also responsible for a website that is kept up to datewith the latest news about treatment, blood products,compensation issues, programs and research. It also has a wealth ofbasic information on bleeding disorders. The individual chaptershave their own webpage that can be accessed from this site, andtwo chapters, B.C. and Ontario, have their own independentwebsites. You can log on at www.hemophilia.ca
The CHS website has over 700 pages of information in bothEnglish and French. Over 100 documents can be downloadeddirectly. The site is updated weekly, sometimes daily. Over 20,000visitors per month log on to the site from more than 175 countriesaround the world. This amount of traffic testifies to the wideappeal and quality of the site!
SCHOLARSHIPS
To encourage people from the bleeding disorders community tocontinue their post-secondary education, both the National andmany individual provincial chapters offer scholarships.Applications for the CHS scholarships are due in April each year.There are 2 scholarships and 1 mature student bursary (over 25years of age) of $4000 each awarded yearly by the CHS.
One of the goals of the CHS Program Committee in 2005 is toevaluate the effectiveness of recent programs and improve the waythese programs are promoted and implemented throughout thecountry.
Adapted from an article which appeared in L’Écho du facteur, theQuebec Chapter newsletter, in December 2004.
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Complementary and Alternative Approaches to Pain Management
Maureen Brownlow, Co-chair,CHS Pain Management Working Group
This article is the last in a series on
appropriate pain management that began
in the fall of 2002. It coincides with the
publication of Pain – The Fifth Vital
Sign: A Resource on Managing Pain for
People with Bleeding Disorders. The
message that has been consistently given
throughout the articles is that pain can be
managed primarily through a partnership
between the person with the bleeding
disorder and the members of his or her
health care team. From the consumer’s
point of view, education about
appropriate assessment and treatment
options is crucial to a good outcome. This
knowledge equips members of the bleeding
disorders community who are seeking
treatment for pain to be advocates for an
effective pain management plan.
Many Canadians look to alternative and
complementary approaches to their health
care. The following article provides an
excellent introduction to the topic in
relation to pain and bleeding disorders.
Pain has become the 5th vital sign to be
measured during each clinic visit. If your
hemophilia team members forget to assess
your pain, give them a friendly reminder.
As a person with hemophilia said in our
first article,
“Suffering along in silence is certainlynot the way to cope.”
PAIN - THE FIFTH VITAL SIGN
MEDICALNEWS
Sophia Gocan, R.N.
What are complementary andalternative approaches to painmanagement?
Complementary and AlternativeMedicine (CAM) are therapies that areconsidered outside of mainstream medicalpractices. The National Center forComplementary and Alternative Medicine(NCCAM) is a component of the UnitedStates National Institutes of Health.NCCAM describes CAM as: a group ofdiverse medical and health care systems,practices, and products that are not presentlyconsidered to be part of conventionalmedicine. In Canada, CAM practices arereferred to as Complementary andAlternative Health Care (CAHC).
Complementary therapies are usedtogether with conventional medicine. Anexample of a complementary therapy isusing aromatherapy to helplessen a person’s discomfortfollowing surgery. In contrast,alternative medicine is used inplace of conventional medicine.An example of an alternativetherapy is using a special diet totreat cancer instead ofundergoing surgery that hasbeen recommended by aconventional doctor.
While there is scientificevidence supporting someCAHC therapies, for most thereare key questions yet to beanswered through well-designedscientific studies—questionsregarding the safety andeffectiveness for the diseases ormedical conditions for which varioustherapies are used.
The list of therapies considered to beCAHC changes continually, as thosetherapies that are proven to be safe andeffective become adopted into conventionalhealth care and as new approaches tohealth care emerge.
What are some commonly usedcomplementary and alternativetherapies?
NCCAM classifies CAM therapies intofive categories, or domains:
1. ALTERNATIVE MEDICAL SYSTEMS
Alternative medical systems are builtupon complete systems of theory andpractice. Often, these systems have evolvedapart from and earlier than theconventional medical approach used inNorth America. Examples of alternativemedical systems that have developed inWestern cultures include homeopathicmedicine and naturopathic medicine.Examples of systems that have developedin non-Western cultures include traditionalChinese medicine and Ayurveda.
2. MIND-BODYINTERVENTIONS
Mind-body medicine uses avariety of techniques designedto enhance the mind’s capacityto affect bodily function andsymptoms. Some techniquesthat were considered CAM inthe past have becomemainstream (for example,patient support groups). Othermind-body techniques are stillconsidered CAM, includingmeditation, prayer,biofeedback, humour therapy,and therapies that use creativeoutlets such as art, music ordance.
3. BIOLOGICALLY BASED THERAPIES
Biologically based therapies in CAM usesubstances found in nature, such as herbs,foods, and vitamins. Some examplesinclude oxygen therapy, dietarysupplements, herbal products, and the useof other so-called “natural” but as yetscientifically unproven therapies (forexample, using shark cartilage to treat cancer).
To protectyourself frompotential risksinvolved whenusing CAHCtherapies, be
sure to seek outonly fully
competent andlicensed
practitioners.
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professions there are significant differencesacross Canada as to whether a particularprofession is formally regulated.Mainstream professional regulatory bodiesor professional associations may havepolicies or regulations regarding thepractice of alternative therapies by theirmembers. The scope, depth, and durationof education and training forcomplementary and alternativepractitioners vary according to the area ofpractice. Try to gather information fromsources that look at both sides of atherapy—those who oppose and those whosupport the therapy. This will give you abalanced view of the therapy you areconsidering.
It is important that the choices youmake are informed. Be cautious aboutany of the claims that you come across.
Reliable information may be hard to find.Examine the scientific information that isavailable to back the effectiveness of atherapy before making health caredecisions. Some CAHC products containpowerful pharmacological substanceswhich can be toxic on their own, or whenused with other medications. Some canaffect the ability of your blood to clot. Thisis especially dangerous for a person with ableeding disorder. Some substances knownto negatively affect clotting are:
• black cohosh• cat’s claw• feverfew• garlic• ginkgo biloba• pau d’arco.
Consult your physician and pharmacistto ensure the product will not cause youdangerous side effects.
Check with your primary care physicianto ensure the therapy you are consideringwill be safe when taking into account yourcurrent health status. Some aspects of yourhealth history could put you at higher riskfor complications. Liver disease, forexample, can be aggravated by certain
herbal preparations. Find outabout possible side effects
and how a given therapymay interact with food,alcohol or other drugs.
The cost of someCAHC therapies mayalso be an importantfactor for you whendeciding if you would
like to explore a given
• Enhancing your sense of well-being• Assisting you in experiencing inner
calm and peacefulness• Assisting you in obtaining better
insight into your personal healing.
Or even more specifically:• Improving blood circulation• Decreasing swelling• Increasing range of motion in joints.
The results that people experience,however, are highly individual, and not allCAHC therapies are equally suitable orcredible. Before you try anything, learn asmuch as you can about the therapies youare interested in, then discuss them withyour doctor.
Are complementary andalternative therapies safe?
Any information that you obtainregarding the safely and effectiveness of aCAHC therapy is not intended tosubstitute for the medical expertise andadvice of your primary health careprovider. Be sure to discuss all of yourCAHC practices with your physician andother health care providers. Your healthcare team is an important part of helpingyou decide if a treatment may beappropriate and safe for you. Do not beafraid to ask their advice if you have aquestion. It is very important that youmaintain open communication with yourhealth care team. By working with yourdoctor and health care team, you canaccess reliable advice and your team canprovide you with supervision of yourprogress.
To protect yourself from potential risksinvolved when using CAHC therapies, besure to seek out only fully competent andlicensed practitioners. Some providers arelicensed by professional licensing bodies.Do not hesitate to ask individuals abouttheir training and experience. Yourprovincial or territorial Ministry of Healthcan provide information on the trainingand supervision of CAHC therapyproviders. There is a coregroup of professions(medicine, dentistry,registered nursing,optometry, andpharmacy) which areregulated in all of theCanadianjurisdictions, but forthe balance of the
4. MANIPULATIVE AND BODY-BASEDMETHODS
Manipulative and body-based methodsin CAM are based on mani-pulationand/or movement of one or more parts ofthe body. Some examples includechiropractic or osteopathic manipulation,reflexology and massage.
5. ENERGY THERAPIES
Energy therapies involve the use ofenergy fields. Bio-field therapies areintended to affect energy fields thatallegedly surround and penetrate thehuman body. The existence of such fieldshas not yet been scientifically proven. Someforms of energy therapy manipulate bio-fields by applying pressure and/ormanipulating the body by placing thehands in, or through, these fields. Examplesinclude qi gong, Reiki, and TherapeuticTouch. Bio-electromagnetic-basedtherapies involve the unconventional use ofelectromagnetic fields, such as pulsed fieldsand magnetic fields.
Are complementary andalternative health care therapieshelpful in reducing pain?
The growing popularity and increaseddemand for CAHC is evident. Manyconsumers report using CAHC in order tomaintain current health and wellness, or topromote their health further and preventfuture illness. Remember, however, thatthese are not scientifically proventreatments.
It is important to ask yourself what youexpect from CAHC therapies. While youmay not be able to find relief for your pain,some CAHC therapies may be able toprovide you with indirect benefits.
Consider the potential benefits beforestarting a treatment. Monitor how you feelas a result of the treatment. Then make adecision about whether to continue it.
A few of the benefits that differenttherapies may be able to exert include:
• Improved management of stress-related symptoms
• Easing your perception of pain• Increased mobility• Decreased anxiety• Reduced tension• Improved posture and flexibility• Improved appetite or weight gain• Restoring a sense of “balance”
in your body• Improved sleep
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The Canadian Health Network, fundedby Health Canada, provides 89 items onalternative health. These includedocuments from and links to the ArthritisSociety, the Canadian ChiropracticAssociation, the Canadian College ofNaturopathic Medicine, the CanadianMedical Association, the CanadianPediatric Society, the College of MassageTherapists of Ontario, the CommunityAIDS Treatment Information Exchange,and Health Canada, to name a few.www.canadian-health-network.ca
Your provincial or territorial Ministryof Health can provide you withinformation regarding the training andlicensing of all health care providers. Linksto each of the provincial and territorialgovernment web sites is available from theCanadian Health Portal website. www.pcs-chp.gc.ca
NCCAM is the U.S. FederalGovernment’s lead agency for scientificresearch on complementary and alternativemedicine. www.nccam.nih.gov
www.camline.org is the address forCAMline, an evidence-based website oncomplementary and alternative medicine(CAM) for healthcare professionals and thepublic.
The National Library of Medicine(www.ncbi.nlm.nih.gov/PubMed/)provides free, open search of Medline, alarge biomedical database.
Books and magazines are also a goodplace to start obtaining information abouta specific therapy. Be cautious, however, asthere are no regulations requiringpublishers to ensure the accuracy of thematerial they print in books or magazines.
Libraries also offer access to researchpublications. A few well-designed studiesare now appearing in high-quality, peer-reviewed mainstream journals such as: theJournal of the American MedicalAssociation, and the New England Journal ofMedicine.
*The mention of any product, service, or therapy inthis booklet is not an endorsement by the CHS andwe encourage you to discuss any decisions about yourmedical treatment or care with your primary healthcare provider.
15H E M O P H I L I A T O D A Y S U M M E R 2 0 0 5m e d i c a l n e w s
therapy. Be sure to find out how muchmoney a therapy will cost up-front. If youhave private health insurance, inquire withyour insurance carrier if it covers any ofthe costs you may incur. Most importantly,monitor your response to therapy.
Can I use complementarytherapies as well as
conventionalmedicinetechniques?
Integrativemedicine, as
defined by NCCAM,combines mainstream medical therapieswith complementary and alternativemedicine therapies for which there is somehigh-quality scientific evidence of safetyand effectiveness.
A truly integrated health care system issomething we all strive for—obtaining thebest and most effective treatments availableto keep illness from occurring, and to healour minds, bodies, hearts and souls.
As these therapies become betterunderstood and validated with soundscientific research, CAHC therapies willbecome integrated into traditional medicine.
This process of integration is assisted bycurrent trends in conventional health carewhich are focusing more on the completeemotional, physical, psychological, socialand intellectual needs of people. There isalso increased attention to the evidencebase of treatment and a greater regard forhealth promotion and disease prevention.
Where can I learn more aboutComplementary and AlternativeHealth Care?
While the Internet provides a wealth ofinformation, there is no control over theinformation that is provided to the public.Personal stories and anecdotes may bemisleading, and it is difficult to validate theinformation presented. It is best to use websites that stem from the government,recognized medical organizations, well-known scientific sources or academicinstitutions.
Health Canada offers informationregarding CAHC therapies and has specificinformation regarding certain therapies.They also have valuable informationavailable through the Health ProtectionBranch and the Office of Natural HealthProducts. www.hc-sc.gc.ca
Introducing…CANADIANPHYSIOTHERAPISTS IN HEMOPHILIA CARE
The physiotherapists associated withthe hemophilia treatment centresacross Canada are pleased to
announce the birth of a new organization! The Canadian Physiotherapists in
Hemophilia Care (CPHC) consists of ther-apists from across Canada with an interestin the treatment of bleeding disorders. Theorganization was formed during the meet-ings of the hemophilia clinic directors,nurses and physiotherapists held May 27-28, 2005 in Hamilton.
“No one knew what to call us,” saysKathy Mulder, one of the Co-chairs. “Wegot tired of being called “The PhysioGroup” and decided we needed a propername, with terms of reference and specificobjectives.”
The physiotherapists were an activegroup during the late 1970s and early1980s. But during the HIV crisis, muscu-loskeletal issues took a back seat and thegroup was not able to meet. With the sup-port of the CHS, the physiotherapists metagain as a group in 1997 in Toronto, andhave tried to meet annually since.
“We are the musculoskeletal experts onthe comprehensive care team,” says Mulder.“With improvements in prophylaxis andcare of bleeds, the role of the orthopaedicsurgeons has decreased, but the need forphysiotherapists is as great as ever. We havean important role to play, educating fami-lies about how to prevent, assess and man-age bleeds into joints and muscles. In the80s, there was an attitude that with every-one on factor concentrate our job would beredundant. That has not proven to be thecase. The physiotherapist continues to bean essential member of the core hemophil-ia treatment team.”
The CPHC has a unique organizationalstructure: the leadership is a “triumvirate”of three co-chairs with equivalent responsi-bilities and power. “This throws people fora bit of a loop,” says Mulder. “But it workswell for us. We have complementary skills
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and variable schedules, so we take turnsbeing the ‘leader’, depending on what therequirements are.”
The current triumvirate consists of PamHilliard from the Hospital for SickChildren in Toronto, Kathy Mulder fromthe Children’s Hospital in Winnipeg andNichan Zourikian from l’Hôpital Ste-Justine in Montreal. Between the three ofthem, they have about 80 years of hemo-philia experience! “Now our goal is toencourage the younger therapists to getmore involved in a leadership role. Nichanhas a few more good years in him, but Pamand I probably won’t be around all thatmuch longer. We need to make sure thatthe organization is in good shape and willcontinue to serve the hemophilia popula-tion for many years to come.” With that inmind, three therapists are being mentoredas “Co-chairs in Training”: they areCatherine van Neste from Quebec City,Nicole Graham from Sudbury and GreigBlamey from Winnipeg.
Mulder advises that they have draftedguiding principles and a mission statement(see below). “Now all we need is a snazzylogo… and we’re working on that!”
Guiding Principles The activities of the CPHC will reflect a
commitment to…–health promotion–evidence-based practice–interdisciplinary communication.
MISSION OF THE CPHC The CPHC exists to… • identify and mentor physiotherapists
new to hemophilia care• assist clinics across the country to
achieve a consistent and appropriatelevel of physiotherapy staffing
• develop or enhance clinical skills byplanning educational workshops andnetworking opportunities, and encour-aging attendance at relevant hemophil-ia-related events (e.g. World Federationof Hemophilia World Congress, WFHMusculoskeletal Congress, etc.)
• develop recommendations regarding themanagement of the musculoskeletaleffects of hemophilia based on the bestavailable evidence
• educate the other members of the careteam and our patients regarding man-agement of the musculoskeletal effectsof hemophilia
• develop leaders within the group tocontinue this work until a cure forhemophilia is found.
June 2005
CanadianPhysiotherapistsin HemophiliaCare WorkshopKaren Christie, PhysiotherapistHemophilia Program, Hamilton HealthSciences Corporation
On May 26-28, 2005 in Hamilton,Ontario, I attended my firsthemophilia physiotherapy
workshop. I not only had the opportunityto meet physiotherapistsfrom across the country anddraw on their expertise intreating patients withbleeding disorders, but I alsohad the pleasure of beingpresent for the birth ofCanadian Physiotherapists inHemophilia Care.
As the physiotherapistwith the hemophilia clinicin Hamilton, Ontario, I am amember of a multi-disciplinary team that treatspatients with bleedingdisorders of all ages. Uponstarting my role in Januaryof this year I wasoverwhelmed by the amountof knowledge required ofme to meet the needs of mypatients. I also felt veryisolated. I would never havebeen able to keep up withthe pace if it had not beenfor the fantastic clinic nursesand physicians. By the middle of March, Iwas starting to feel more comfortable withmy new role and I began to receive emailsabout the May physiotherapy workshop. Iwas really excited at this opportunity tomeet physiotherapists with extensiveknowledge and expertise in hemophilia.Baxter, Bayer, NovoNordisk, Wyeth,AHCDC and the Canadian ProphylaxisStudy pledged support for our group, andall of our members were given theopportunity to attend. By supporting us,our sponsors acknowledged the importantrole that physiotherapists, as integral
members of the multi-disciplinary team,play in treating patients with hemophilia. Abig thank you also goes out to ClareCecchini of the Canadian HemophiliaSociety who handled all of the logistics forour group. We would not have been therewithout your support. Thank you!
One of the highlights of the workshopwas the presentation by Catherine vanNeste on osteoporosis and hemophilia.Catherine completed an extensive literaturereview and critical appraisal, whichindicated that the most important stage forbone development is in early adolescenceat the start of puberty. This findinginitiated an insightful discussion on sportselection and activity recommendations.Therefore, a focus group was formed toanalyze the specific biomechanical aspectsof several sports to aid in the decisionmaking process when advising patientsabout sport selection.
The presentation on theuse of ice in acute bleeds byNick Zourikian and KathyMulder sparked aninformative and interestingdebate. In short, the currentliterature does not clearlyindicate that the use of iceduring an acute bleed willhasten hemostasis.However, since ice has beena mainstay of practice inhemophilia and acute injurymanagement, a focus groupwas formed. This focusgroup will delve into theresearch literature andattempt to establish bestpractice recommendationsfor all hemophilia clinicsacross the country.
As a “rookie”physiotherapist inhemophilia care, I foundthe clinical and casepresentations extremely
beneficial. Several of our group memberspresented clinical scenarios of patients and,as a group, we debated and discussed themost appropriate physiotherapytreatments. This session provided a relaxedand open atmosphere for a novice to askquestions.
The finale of the entire event was adinner with the clinic directors and nurses.It was truly a wonderful evening and agreat way to end an exceptional conferenceespecially with the Canadian Physio-therapists in Hemophilia Care as the lastones on the dance floor!
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Upon starting myrole in January of
this year I wasoverwhelmed by the
amount ofknowledge required
of me to meet theneeds of my
patients. I also feltvery isolated. I
would never havebeen able to keep up
with the pace if ithad not been for the
fantastic clinicnurses andphysicians.
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THE HEPATITIS C
PRESS REVIEW Jeff Rice, CHS Hepatitis C Coordinator
IDENTIFICATION OF SPECIFIC GENES PREDICTS WHICH PATIENTSWILL RESPOND TO HEPATITIS CTREATMENT
TORONTO, May 3, 2005 - For the firsttime, physicians at University HealthNetwork and University of Toronto haveidentified a small subset of genes that canpredict whether a patient with chronichepatitis C will be able to respond tocurrent treatments. These genes could alsobecome the basis of a simple new test inthe future to predict which patients willrespond to therapy.
The study found that the differencebetween those patients who responded totreatment and those who did not was thelevel of expression—whether the geneswere turned on or turned off—of 18 genes.
“Our results demonstrate that arelatively small number of genes canpredict response to therapy. These genesmay be important to the ability of thepatient to eliminate the virus, so studyingthese genes in more detail will hopefullylead to novel antiviral treatments,” said Dr.Ian McGilvray, the senior author of thestudy. “By manipulating the products ofthese genes, we might be able to improvetreatment responses to this chronicdisease.”
In the near future, determining thelevels of a small subset of genes in patients’liver biopsies, with perhaps a simple bloodtest, may be helpful in deciding who willrespond to treatment of chronic hepatitisC with current combination therapy.
NEW DATA CALLS INTO QUESTIONTHE “WATCH-AND-WAIT”TREATMENT STRATEGY
BASEL, Switzerland, April 13, 2005 - Arecent study will sound a wake-up call forthousands of hepatitis C patients who arenot currently receiving treatment for theirdisease.
New data demonstrate that patients
with “normal” liver enzyme levels (alanineaminotransferase or ALT) who are treatedearlier, at a younger age, are much morelikely to achieve a sustained virologicalresponse (indicative of a cure) than olderpatients. These findings reinforce thegrowing body of evidence that the “watch-and-wait” treatment strategy for hepatitisC patients may not be the most effectiveapproach.
“Many hepatitis C sufferers with socalled ‘normal’ ALT levels are not receivingtreatment, either because they have beentold they don’t require therapy or becausethey’re choosing to wait,” said ProfessorGane, from Auckland and MiddlemoreHepatitis Clinics and the New ZealandLiver Transplant Unit, and lead author ofthe study. “The results from our studyconfirm that not only do these patientsbenefit from peginterferon alfa-2a andribavirin combination therapy, they alsoexperience better results when treated at anearly age.”
LIVER BIOPSYUSEFUL/CONTRAINDICATED INHEMOPHILIAC PATIENTS WITH HIV-HCV CO-INFECTION?
ST. LOUIS, Missouri, May, 2005 - Patientswith hemophilia pose a particular problemwhen it comes to liver biopsy. It has longbeen known that liver biopsy can beperformed safely in hemophiliacs, but itrequires the use of costly clotting factorconcentrates and close supervision byexpert physicians. Thus, liver biopsy is notcontraindicated. However, is it useful? Therecent National Institutes of HealthConsensus statement on the managementof hepatitis C still identified a role for liverbiopsy in giving some idea about prognosis(whether cirrhosis is present) and inindicating whether treatment wasnecessary (liver disease severity). Manyphysicians believe that a biopsy is notnecessary for patients infected with HCVgenotypes 2 or 3 because almost all ofthese patients respond to antiviral therapyand can be treated directly. For thoseinfected with HCV genotype 1 for whichresponse rates are low (and even loweramong those with HIV co-infection), acase can be made for only treating patientswith histologic evidence of severe orprogressive liver disease, thus requiring abiopsy. Finally, it is common practice toscreen patients with cirrhosis at regularintervals for hepatocellular carcinoma;
thus, a biopsy would identify thoseindividuals in need of screening.
Editor’s note: Many of these stories wereuncovered by Ian DeAbreu, a volunteer withHemophilia Ontario, who valiantly searchesthe Internet every morning before most of usare awake to find news about hemophilia,vWD, HIV, HCV and blood safety. If youwould like to be on Ian’s mailing list toreceive the original articles every morning,contact him at [email protected]
Self-infusionTraining at Age 3!Patricia StewartMember, CHS Program Committee
Most children begin learning self-infusion at about the age of seven.
Some studies in the UK show a slightlyyounger age. However, Dr. S. ElianeSandoval, a paediatrician from Brazil, hasdeveloped a method for teaching childrento self-infuse beginning at the age of three!In her oral presentation at HemophiliaWorld Congress 2004 in Bangkok,Thailand, Dr. Sandoval cited a number ofreasons for encouraging children thisyoung to learn the procedure:
–Children have an innate curiosity forlearning the process.
–They like to imitate the nurses and theritual for infusion.
–They need to learn about their own body.–It helps them learn to identify bleeding
symptoms for themselves.–They need to learn about hemophilia.–Children feel more autonomous when
they control the infusion process.
Obviously, the child must have goodvenous access to carry out self-infusion,and parents must be willing to work withthe nurse and the child to accomplish thistask. Having a clear teaching procedureworked out with a reward system of somekind can help to get through difficultmoments. It is helpful to work with apsychologist to find a teaching method.
The procedure for learning self-infusionwas presented with photos of a four-year-old boy carrying out the full procedure,
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Claudie OuelletS t - P a s c a l - d e - K a m o u r a s k a , Q u é b e c
I’M TWELVE YEARS OLD and have suffered from factor XIII
deficiency since I was born. I had a lot of bruising, and once I had cerebral
haemorrhaging. I also have bleeding into my joints. When I was five, the
doctors discovered that I had a factor XIII inhibitor. My body was destroying
the factor XIII every time I was injected.
At first, I was given big doses of chemotherapy in the hope of getting
rid of the inhibitor. Later, it was injections of factor XIII concentrate every
day. The doctors hoped my body would adapt to it. At the same time, they
tried more than twenty treatments with plasmapheresis and
immunoabsorption: all the plasma in my body was passed through a
machine to remove the factor XIII antibodies. But none of these things
worked. Today, I continue to receive six vials of factor XIII every day. My
father and mother do the perfusions. I’ve been getting shots every day for
three years now.
The only sports I can do are swimming and walking. The others are
too dangerous for me. One day, when I’m cured, I’ll start horseback riding.
It’s something I’ve always wanted to do. I love horses.
I still do pretty well at school. In grade 5, I missed three months of
classes, but I passed. Now I’m in high school. I’m in a theatre group and I do
improvisation. This year, I’ll only miss one day every three months, because
I have to go to Sainte-Justine Hospital for tests, and it’s 10 hours round-trip
by car.
Disease might be the worst thing that can happen to someone. I
haven’t had any big problems so far, but I know it could happen one day. I
hope that my body will adapt to factor XIII some day, so I won’t have any
more inhibitor. Some people have already had this, but they’ve been trying
with me for three years and it hasn’t worked.
The doctors are looking for new treatments to try out on me. I could
be completely cured. I wouldn’t have to worry any more. I would be able to
do sports. I could go and sleep over at friends’ houses.
In 10 years, I think I’ll be cured. I plan to study to become a dentist or
doctor. What I would tell people is “never give up.”
OUR STORIES
Editor’s Note: We invite you to submit your own story or the story ofsomeone you think deserves to be better known. One story will be chosen to appear in each issue of Hemophilia Today.
“ N E V E R G I V E U P ”What I tell people is
H E M O P H I L I A T O D A Y S U M M E R 2 0 0 518
from washing his hands, to preparing theconcentrate, to the big grin of satisfactionon his face as he showed off his infusionskills.
These directions are included in thelearning process:
–Give the child confidence andencouragement.
–Show the routine simply. It is simple.The parents learned it, too.
–Repeat the proper names of items, suchas syringes and tourniquets.
–Repeat the sterilization procedurefrequently.
–Talk about hemophilia, giving properinformation about this disorder and itseffects.
One of the problems encountered whilethe child learned to self-infuse includedparents who were not confident in thechild’s ability to learn. At other times, itwas the nurses who had to be convincedthat children can learn to self-infuse at thisearly age. Children have different moodsand sometimes they don’t want anything todo with self-infusion. This is where beingprepared with a teaching procedure comesin handy. And sometimes, either theparents or the children are simply notinterested in learning self-infusion. Bothhave to be ready and motivated.
Results showed that 90% of childrenwho attempted were successful in learningself-infusion. There must be a goodcooperative relationship between theparents, the nurse and the child for thelearning process to be successful. Parentsshould only help when it’s absolutelyneeded. A reward system is used toencourage success, and there should be aspecial reward once the child hassuccessfully learned to self-infuse.
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What is the Blood Borne PathogensSurveillance Project?The BBPSP consists of a secure collectionof blood samples collected throughCanadian comprehensive bleeding disorderclinics, with a link to clinical data from theCanadian Hemophilia Assessment andResource Management System (CHARMS)database. The collection or archive ofblood samples is housed in a secure lab inEdmonton, where it is made available tolaboratories looking for known andemerging blood-borne pathogens, as well
Canada has agreed to provide guidance forcounseling patients who have been foundto have evidence of exposure to a newblood-borne pathogen.
Who is supervising this project?The BBPSP is directly supervised by theresearch committee of the AHCDC, as wellas by a multidisciplinary oversightcommittee, which includes members of theCanadian Hemophilia Society Blood Safetyand Supply Committee. As part of theoversight process, the BBPSP undergoesregular audits. It was successfully auditedin 2004 by a multidisciplinary group thatincluded Health Canada, the AHCDC, andthe Canadian Hemophilia Society, and in2005 by the US Centers for DiseaseControl.
There have been many real and effectivechanges in the blood system over the lastdecade, that have made the system moreaccountable, safe and efficient. Surveillanceof blood products is a key part of the newblood system, aiming to providesignificantly improved safety of thesevaluable treatments for the future. TheBBPSP is central to the new surveillance ofblood products, providing secure andreliable information to the people affectedby these products, their treaters, thesuppliers and the public health agency thatoversees the system.
In his1997 report, Justice Horace Krevermade many recommendations to improvethe blood system. In particular, inrecommendation 40 he recommended “thatthere be an active program of post-marketsurveillance for blood components and bloodproducts”. In response the FederalGovernment provided money for surveillanceby the Transfusion Transmitted Injuries(TTI) section, Blood-Borne PathogensDivision, of the Centre for Infectious DiseasePrevention and Control, in the Populationand Public Health Branch of HealthCanada. This group in turn asked theAssociation of Hemophilia Clinic Directorsof Canada (AHCDC) to set up asurveillance system for bleeding disorderpatients, leading to what has come to beknown as the Blood-Borne PathogensSurveillance Project (BBPSP).
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From left to right: Nancy McCombie,Transfusion Transmitted Injuries Section ofthe Public Health Agency of Canada: CyrilDubourdieu, member of the CHS BloodSafety and Supply Committee, and Dr. BruceRitchie, during the audit of the Blood-BornePathogen Surveillance Project.
as labs that look for the mutation causingthe bleeding disorder, and other geneticchanges that affect the bleeding tendency.The collection undergoes regular auditsand oversight to assure that it functions ina transparent and responsible manner.
What does the lab collect and what arethe samples consented for?Blood is collected and labeled with abarcode in the clinic and forwarded to thesurveillance lab, where it is processed intoplasma, DNA, RNA and cells. Theinformed consent allows the investigatorsto look for known and emerging blood-borne pathogens, as well as known andemerging genetic changes causing ormodifying the underlying rare blooddisorder. This is a long-term surveillanceproject, in which the investigators requestre-consent and repeat samples every year,as long as the subject is willing and able toparticipate, and funding is available.
Blood is collected in blood collection tubeslabeled with a bar-coded registry numberonly and sent to the central surveillancelaboratory. No other identifyinginformation is on the tubes, so the BBPSParchive has no information that canidentify any participating individual. In thelab, samples, are given an inventorynumber, which is used for all furthertesting. Samples are tested only in labsspecifically contracted to the surveillancelab, and contracts are supervised by theresearch subcommittee of the AHCDC.Contracts include the statement that: “Noother testing than that described herein,will be done, and test results will bereported back to the surveillance lab in atimely fashion.” Reporting is done in theform of a pre-formatted spreadsheet, tofacilitate electronic transfer of data back tothe clinic for that patient. Notice is given toall associated Research Ethics Boards ofeach new test, and receipt of all results afterthe tests has concluded (not the resultsthemselves).
How are results handed?Test results will be sent, as soon as possible,to the clinics that sent in the samples, tothe research subcommittee of the AHCDC,and to an oversight board. The researchcommittee and the oversight committee aregiven only summarized data, while theclinics are given individual test results, sothat participants can be notified of theirresults. The Public Health Agency of
BLOODTHE
FACTOR
The Blood-BornePathogensSurveillance ProjectBruce Ritchie, M.D. Chair, CHS Medical andScientific Advisory Committee
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Interview by Patricia Stewart
Hemophilia Today: Where did yougrow up and where did you studymedicine?
Dr. Ritchie: I was born, grew up andwent to medical school in Edmonton.When I graduated in 1978, I went toNew Zealand for post-graduatetraining, spending three of the nextfour years there. I trained as a “HouseOfficer” and then as a “MedicalRegistrar”. I returned to Calgary in1983, to complete internal medicineand hematology training. I married myNew Zealand girlfriend in 1983 (shetells me the kiwi girls found Canadiansexotic). I moved to Vancouver in 1986to train in medical oncology, stayingon to work for three years as a post-doctoral fellow in the biochemistry labof Ross MacGillivray. In this position, Iworked on the expression ofrecombinant factor XII, and analysis ofmutations of Factor IX andantithrombin III. In 1991 I movedback to Edmonton to take up mycurrent position.
DR. BRUCE RITCHIE problems. I believe in thework the CHS does and amimpressed with theirefficiency, including thechanges they helped bringabout in the blood system.”
Hemophilia Today: What do you do inyour spare time?
Dr. Ritchie: I have three 75 percentpart-time jobs right now that includemy clinic work, research and teachinglab students. I’ll have 8 students in allthis summer. And then there’s myvolunteer work that I have troublegetting time to do because of my jobs.I spend all of my free time with myfamily. My wife Margie and I havethree boys - Nic (19 years), Robbie (16years), and Scott (14 years). They’vekept me very busy over the years,shuttling them to music lessons(they’ve finally forgiven me andthanked me for that), soccerpractices/games, snowboarding, andcamping. I read at night when I can’tsleep - history, science, and sciencefiction.
What other job or profession would youlike to have tried or do in future?
Dr. Ritchie: Materialssciences/Engineering attracts myinterest and I read a lot in this area.I’d like to work more with my hands,making things. This would includecreating space suit material or makingmaterial so that the knees of kids’pants don’t always wear out. Ormaking the machines used for testingvarious materials as well. I also have anumber of friends working in thedeveloping world. This appeals to me,although I fear I am too old forfieldwork. But I think I may have some organizational skills that may be of use.
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Hemophilia Today: How did you cometo work in hemophilia?
Dr. Ritchie: I started working withblood clotting disorders with Dr. RossMacGillivray during my post-doctoralfellowship in Vancouver. When Imoved to Edmonton I took over theadult side of the Northern AlbertaComprehensive Hemophilia Clinic. Mylab has continued to work in the areasof mutation analysis, gene therapy, andthe tissue archive, of course. We areparticularly interested in using nakedDNA/non-viral vector strategies forgene therapy. This type of researchoffers new possibilities for a cure.
Hemophilia Today: Why did you decideto get involved in volunteer work withCHS?
Dr. Ritchie: It just sort of happenedbecause of my position as hematologistat the clinic. I began volunteering withCHS in the late 1990s, first as part oftheir research grant review panel, andthen in 2002 as Chair of MSAC. Ijoined the Blood Safety and SupplyCommittee in 2003 and the Networkof Rare Blood Disorders in 2004.
“I admire the courage ofpeople with bleedingdisorders. This isn’t theRambo type of couragepeople think of, but thequiet, getting on witheveryday living that peoplewith a serious illness do ona daily basis, despite their
Dr. Bruce Ritchie is presentlyChair of the CHS Medical andScientific Advisory Committee(MSAC) and is involved in anumber of other CHS committeesincluding the Blood Safety andSupply Committee and the newlyformed Network of Rare BloodDisorder Organizations. He is themastermind behind the Blood-Borne Pathogens SurveillanceProject. (See page 19.) We’d liketo thank Dr. Ritchie for takingthe time to do this interview.
PROFILE
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the potential for vCJD transmissionthrough the global blood supply will besignificantly reduced.
One case of vCJD is believed to havebeen transmitted in the United Kingdomthrough red blood cells. A second case ofinfection is also thought to have occurred,although the recipient died of other causesbefore developing symptoms. No cases areknown to have been transmitted throughclotting factor concentrates.
The filter device, known as theLeukotrap Affinity Prion Reduction Filter,is currently being tested by bloodtransfusion services in the U.K and Ireland.The filter has already received Council ofEurope “marking,” meaning that it has metthe agency’s safety requirements formedical devices.
Pall will submit study information tothe U.S. Food and Drug Administration(FDA) in 2006. Dr. David Asher, head ofthe FDA division of emerging andtransfusion-transmitted diseases has statedthat, “Physical removal of vCJD fromblood appears to be the most promisingline of attack.” A test to detect vCJD inblood donations is not currently available.
Sources: America’s Blood Centers (ABC)Newsletter, June 3, 2005 and the SeattleTimes, June 12, 2005
� Promising gene therapy results in miceand dogs reported
April 18, 2005 – A study in the April 26,2005 issue of the Proceedings of theNational Academy of Science reported thatsignificant and sustained increases in factorVIII levels in 11 newborn mice and twonewborn dogs with hemophilia A have
been achieved through gene therapy byresearchers at Washington UniversitySchool of Medicine in St. Louis, Missouri.
The researchers eliminated parts of thefactor VIII gene and other geneticcomponents to minimize the materialneeded and used a large viral vector calledgamma retroviral vector.
Dr. Katherine Parker Ponder, seniorauthor of the study and associate professorof medicine, biochemistry and molecularbiophysics, commented, “We are reallypleased with the results, because theanimals produced about 20 times morefactor than has been achieved in priorattempts using gene therapy forhemophilia A in dogs.”
Factor VIII activity levels in thelaboratory animals have remained stablefor one and a half years. In addition, thetechnique using newborn animals had theadvantage of not prompting an immuneresponse, which in many other cases hasended up blocking the blood clottingactivity of introduced factor VIII inhemophilic animals.
In the future Dr. Ponder hopes to bringabout the same results in animals moreclosely related to humans, where thepotential for inhibitor development andthe associated complications are greater.
Source: Washington University, St. Louis,MO, April 18, 2005
� Hemophilia drug may also work forstrokes
Results from a clinical trial conductedby Novo Nordisk of acute intracerebralhemorrhage (ICH) showed that treatment
with NovoSeven, called Niastase® inCanada, improved neurological and
functional outcomes as comparedto placebo. The study, published
in the New England Journal ofMedicine, was the largestcompleted trial for ICH todate. Prior studies ontreatment options for ICHhad not been very welldocumented or as effective.
Source: Mayer, S., et al. NEJM,Vol.352, No. 8. Pgs 777-785,
2/24/05
� Bayer to begin trials for longer-lastingrecombinant factor VIII product
LEVERKUSEN, Germany, June 29, 2005 -Bayer Biological Products (BP) announcedthat the Food and Drug Administration(FDA) has granted permission to beginPhase I clinical trials for a new formulationof its recombinant factor VIII product,Kogenate®.
This new formulation uses PEGylatedliposome technology, patented by theDutch company Zilip-Pharma, to producea longer-acting factor product. If provensafe and effective in this and later trials,hemophilia A patients would have access toa product with a prolonged half-life,resulting in fewer infusions. Liposomeshave been used successfully with otherapproved pharmaceuticals.
Diane Nugent, M.D., from theChildren’s Hospital of Orange County inCalifornia and one of the investigators forthe small Phase I trial to test safety,commented on the potential benefits topatients, “This is a treatment option thatwould result in less frequent dosing, say,once weekly or less, and represents a majoradvance in hemophilia care, significantlyimproving convenience for patients.”
� Device could reduce vCJDtransmission in bloodsupply
June 2005 - A devicedeveloped by the PallCorporation of Long Island,NY, is reported to removefrom blood 99.9% of theabnormal prion proteinsresponsible for variantCreutzfeldt-Jakob disease(vCJD) in humans. It is hopedthat by separating out theseproteins from the blood of donors
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BLOODTHE
FACTOR� PRESSREVIEW
David Page, CHS Director of Programs and Communications
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This article was written to give a simple listof treatment options available formenorrhagia. Any treatment decisions mustbe made in collaboration with a health careprofessional; each case and individualreaction to treatment differs. Thanks to Dr.Rochelle Winikoff, hematologist at l’Hôpital Ste-Justine in Montreal, for her review ofand contribution to this article.
Several recent studies have estimated theprevalence of menorrhagia in womenwith inherited bleeding disorders to be
between 59-93%. In comparison,approximately 10% of normal womenexperience menorrhagia.1 In a 1998 study byKadir et al., 17% of women (26/150) withmenorrhagia were found to have anunderlying inherited bleeding disorder.2
Inherited coagulation disorders are found inabout 20% of adolescents who requirehospital admission for menorrhagia.3
It is estimated that approximately half ofall cases of menorrhagia have a known causeidentified by the gynaecologist. It isimportant to consider a bleeding disorder asa cause of menorrhagia when nogynaecological cause can be found. In thepast and, unfortunately, still today, manywomen with menorrhagia, sometimes asyoung as 15 years of age, have undergone anunnecessary hysterectomy simply because noone ever thought to do proper testing for ableeding disorder.
M E D I C A L O P T I O N SHormonal TherapyIn many women, combination oralcontraceptives are an effective and safetherapy for menorrhagia, reducing menstrualblood loss by approximately 50%, due in partto the thinning of the uterine lining. Theseagents also increase the plasma levels offactor VIII and von Willebrand factor. Morerecently, another mode of delivery withlevonorgestrel, a hormone similar toprogesterone, has become available in theform of an intrauterine device (Mirena®).This system has been extensively evaluated inwomen with menorrhagia without bleedingdisorders who are on waiting lists for
hysterectomy. It has been shown to reducemenstrual blood loss by between 74-97% andresulted in 64-82% of women subsequentlycancelling their hysterectomies. Recently, thismethod has been shown to be safe andeffective in controlling menorrhagia in agroup of women with congenital bleedingdisorders. (Kingman et al. BCOG2004;111:1425-9)
Anti-fibrinolytic AgentsThe antifibrinolytic drug, tranexamic acid,substantially reduces the fibrinolytic capacityof menstrual blood and, as a result, menstrualblood loss is reduced by approximately 50%on average. An advantage of this treatment isthat it only needs to be taken at the time ofmenstrual bleeding. The only side effect seenat all commonly is mild nausea.
Desmopressin (DDAVP®)For the treatment of menorrhagia secondaryto some types of von Willebrand Disease,hemophilia A (carriers) or in patients withplatelet dysfunction, administration ofdesmopressin is effective; the intranasal orsubcutaneous routes are more practical.Desmopressin administration should beginwhen menstrual bleeding starts and can berepeated at 12-24 hour intervals for the firsttwo to three days of menstruation. The sideeffects of desmopressin are usually mild andtransient.1 Desmopressin can be a veryeffective complement of antifibrinolytictherapy.3
Coagulation factor concentratesThe use of coagulation factors is to increasefactor levels when other methods areunsuccessful or not viable. Factorconcentrates exist for the treatment ofFactors I (fibrinogen), FVII, FVIII, FIX, FXI,FXIII and vWD. Some factor concentrates aremanufactured from human plasma whileothers use recombinant methods that don’tinclude human plasma.
S U R G I C A L O P T I O N SWhen none of the previous treatmentsprevents major menstrual blood loss, surgicalintervention may become necessary. As withany surgical intervention for a person with ableeding disorder, all treatment decisionsshould be made in collaboration with ahematologist and gynaecologist to assure thatproper precautions are taken.
Endometrial ablationA simple safe outpatient procedure calleduterine or endometrial ablation (EA) willoften alleviate excessive menstrual blood loss.The lining of the uterus is burned away orvaporized, depending on the technique.Newer procedures can be performed in thedoctor’s office, taking less than 15 minutesand requiring only local anaesthesia.
Most women who have an EA are able toreturn to most normal activities within 2-3days. While conception is unlikely afterendometrial ablation, there is still a slightpossibility of pregnancy.
This procedure is not guaranteed toproduce amenorrhea (cessation of menses).Most studies have shown that the rate ofabsolute stoppage of menstrual bleeding is50%, while another 25% of patients have verylittle bleeding. Approximately 10% of womenwill go on to have a hysterectomy and 10%will require a repeat endometrial ablation fora failed response to the first treatment. There-operation rate at five years may be up to40% with rollerbarrel ablation.4
Hysterectomy Hysterectomy, the surgical removal of theuterus, is a permanent solution for thetreatment of menorrhagia and abnormaluterine bleeding, and is usually reserved as alast resort when other alternatives have failed.Recovery time is longer than that for uterineablation.
There are three major approaches to removethe uterus: through the abdomen (abdominalhysterectomy - AH), through the vagina(vaginal hysterectomy - VH), or through thevagina with the aid of a laparoscope(laparoscopic assisted vaginal hysterectomy -LAVH). Typically, the hospital stay is 1-2 days.Lifting is not allowed for 6 weeks.
References
1. Management of Women with BleedingDisorders, AHCDC Sub-committee on Womenwith Bleeding Disorders, 2003, CHS website:http://www.hemophilia.ca/en/13.1.php
2. Inherited Bleeding Disorders in Women withMenorrhagia Kadir et al. Lancet 1998; 351:485-89inherited hemostasis problem
3. Reproduction and Surgery for Women with aBleeding Disorder, Presentation by Dr. PaulaBolton-Maggs, Manchester Royal Infirmary,Dublin, October 2003.
4. Endometrial Ablation, Hemophilia Today, March2003
H E M O P H I L I A T O D A Y S U M M E R 2 0 0 522 t h e f e m a l e f a c t o r
FEMALE FACTOR
THE
Patricia Stewart
Treatment Options for Menorrhagia
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Dr. Man-Chiu Poon, CalgaryDr. Koon Hung Luke, Ottawa
T he challenges to developinghemophilia care in China arecolossal. With a population of 1.3
billion, China is estimated to have about65,000 to 100,000 people withhemophilia (PWH).
While there are well-trainedhematologists interested in the care ofthese patients, the problems they faceinclude: insufficient infrastructure andthe high cost of treatment products. Thusonly a fraction of the patients have beendiagnosed and hemophilia care is poorlydeveloped. In 2004, the NationalHemophilia Registry at Tianjin, reported4132 PWH registered at 11 clinics,suggesting that only about 5% of PWHare accessing hospital care. Most PWHsuffer severe joint disabilities with poorquality of life and a shorter lifeexpectancy.
The Canadian Hemophilia Society(CHS) first became involved withhemophilia care in China in 1993,supporting Dr. Poon to travel to aWorld Federation of Hemophilia(WFH) workshop in Tianjin. CHS alsoencouraged the establishment of theWFH twinning between Tianjin(Hematology Institute) and Calgary(Dr. Poon) in 1997. In 2000, WFHlaunched a priority project for China.Two twinning partnerships were added:Guangzhou (Nanfang Hospital) withOttawa (Dr. Luke) in 2000, andShanghai (Ruijin Hospital) with Calgaryand Ottawa in 2002.
With grant funding from WFH andCHS, four educational booklets werepublished in Chinese. Peter Jones’ Livingwith Haemophilia was translated. A teamof professionals was trained in Canada,U.K. and Singapore. Five patient leaderswere trained by WFH and CHS and they
23t h e g l o b a l p e r s p e c t i v e
GLOBAL PERSPECTIVE
THE
HEMOPHILIA CARE IN CHINA: NEW STRATEGIES AND OPPORTUNITIES IN 2005AND BEYOND
are most effective in their roles withintheir communities, establishing a webbase, Hemophilia Home of China. Between2001-05, WFH launched four officialvisits to China.
In 2001, at a priority settingconference in Guangzhou, three priorityprojects— registry, nursing anddiagnosis—were launched. Thedevelopment of a National HemophiliaTreatment Centre Collaborative Networkto coordinate future development wasplanned. This was inaugurated at theWFH Hemophilia Conference (Jinan) inMarch, 2004, with six founding centresfrom Beijing, Tianjin, Jinan, Heifi,Shanghai and Guangzhou.
The major predicaments facing PWHare access to care, high cost of treatmentand lack of services for joint disabilities.Our next strategies will focus onimproving care to a large number ofPWH by addressing these issues. Ourpriorities are to promote home care forhemophilia, and to develop hemophilianursing and physiotherapy, essentialservices not presently available. In
addition to training initiatives, we willdevelop a hemophilia nursing manualappropriate for use in China and aphysiotherapeutic exercise guide for homeuse. A Bayer International Award for 2005has been granted for the nursing project.
At the regional level, we starteddeveloping outreach networks. In 2004,in Beijing, a consortium of four hospitalswas established to coordinate hemophiliacare. In Guangzhou, a WFH grant wasawarded to develop a clinical networkwith four regional hospitals.
China is perhaps an ideal place todetermine minimal effective therapeuticfactor dose, as concentrates are notaffordable. Minimal dose prophylaxis toprotect children from joint damage is anurgent need in China.
We appreciate the continued supportfrom our partners, CHS, WFH and otherstakeholders. At present with the firmcommitment of the NationalHemophilia Treatment CentreCollaborative Network, we have a greatopportunity to move hemophilia careforward in China.
China is estimated to have about 65,000 to100,000 people with hemophilia (PWH)
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THE MEDICAL AND MULTIDISCIPLINARY PROGRAM COMMITTEES FORHEMOPHILIA 2006 WORLD CONGRESSare busy putting together the most complete and informative program to date.
CALL FOR ABSTRACTSThe Congress Organizing Committee invites the submission of abstracts for consideration in the final program.Contributions will be peer reviewed and the majority of abstracts will be presented as posters. Those accepted as oralpapers will be presented within the Scientific and Multidisciplinary Programs. Submitting authors have the option ofchoosing their presentation preference, oral or poster, but the Program Committees will make the final decision. Forthose indicating that their preferred presentation is poster format, please note that during the poster viewing periods,specific times will be scheduled for the author to be in attendance.
Abstracts must be submitted on-line at www.hemophilia2006.org. Faxed abstracts will not be accepted.
KEY DATES:
Early Bird Registration Deadline October 21st, 2005
Deadline for abstracts November 30th, 2005
Hemophilia 2006 World Congress: May 21st – May 25th, 2006
Other hot topics to look out for include:• Treatment of Patients with Inhibitors• Cellular and Genetic Therapies, and other Novel Therapies• Pathophyisology of Hemophilic Arthritis• Joint Replacement Surgery• Genetic Engineering and Production for Factor VIII
with Enhanced Properties • Quality of Life and Hemophilia• Dental Care for People with Congenital Bleeding Disorders• Quality Control in the Laboratory• Pain Management for Children and Adults
Plenary sessions include:• Musculoskeletal Issues: Total Joint Replacements
in Patients with Inhibitors• The Molecular Basis of vWD• The Pathogenesis of Hemophilic Arthropathy• Strategies Toward a Longer-Acting Factor VIII• The Uterus: A Recycling Model for the Physiology
of Coagulation and Fibrinolysis• Why do Inhibitors Develop?• The Future of Comprehensive Care for Inherited
Coagulation Disorders
Organized by: Hosted by:
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