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March 2011
Hem philia Vol 46 No 1
Canadian
Hemophilia
Society
Today
Serving the
Bleeding Disorders
Community
www.hemophilia.ca
See you
in Calgary!
2 HEMOP HIL IA TOD AY M A R C H 2 0 11
T he B ene FACTORs C lub
The Canadian Hemophilia Society (CHS) VI S ION ARI ES
relies on the generosity of our donors
to fulfill our mission and vision.
We are fortunate to count on a group
of exceptional donors who have
committed to making an annual
I NN OVATOR
investment to support the CHS
and its core programming needs.
To recognize this special group
of donors we have created the
BeneFACTORs Club, the CHS’ highest
BUI LDERS
philanthropic recognition, which
symbolizes the critical bond between
our organization, the donor and every
person we serve with an inherited
bleeding disorder. Corporations that
make annual gifts of $10,000 or more BELI EVERS
to support our organization and its core
programming needs are recognized as
members of the BeneFACTORs Club.
The Canadian Hemophilia Society
acknowledges their tremendous effort.
Grand Benefactor – multi-year commitment
HEMOP HIL IA TOD AY M A R C H 2 0 11 3
Hem philia Canadian
Hemophilia
Society IN THIS ISSUE
Today Serving the
Bleeding Disorders
Community
MARCH 2011 VOL 46 NO 1
MARCH 2011 VOL 46 NO 1 WORD FROM THE EDITOR..................................................................................................4
Hemophilia Today
400-1255 University Street
MESSAGE FROM THE PRESIDENT ..................................................................................5
Montreal, Quebec H3B 3B6
Phone: 514-848-0503 COMMUNITY NEWS
Fax: 514-848-9661 CHS Strategic Planning 2011-2015 ..............................................................................6
Toll-free: 1-800-668-2686 Chapter Spotlight ..............................................................................................................8
chs@hemophilia.ca
www.hemophilia.ca Challenges, Choices, Decisions: A Guide on Orthopedic Surgery
for People with Hemophilia ..........................................................................................11
CHS western regional workshop: Rare Bleeding Disorders Through
Hemophilia Today is the official publication of the Canadian
Hemophilia Society (CHS) and appears three times yearly.
the Lifespan ......................................................................................................................12
The Canadian Hemophilia Society strives to improve the
health and quality of life for all people with inherited bleeding
The gift of life… 1,000 times! ......................................................................................13
disorders and to find a cure. Its vision is a world free from the
pain and suffering of inherited bleeding disorders.
2008-2010 CHS Report Card on Canada’s Blood System....................................14
The purpose of Hemophilia Today is to inform the
hemophilia and bleeding disorders community about current Upcoming Events ............................................................................................................16
news and relevant issues. Publications and speakers may freely
use the information contained herein, provided a credit line Notice – The CHS Annual General Meeting ............................................................16
including the volume number of the issue is given. Opinions
expressed are those of the writers and do not necessarily reflect Rendez-vous 2011 in Clagary ......................................................................................17
the views of the CHS.
The CHS consults medical professionals before distributing
any medical information. However, the CHS does not practice
medicine and in no circumstances recommends particular MEDICAL NEWS
treatments for specific individuals. In all cases, it is recommended
that individuals consult a physician before pursuing any course of Hepatitis and HIV Press Review ..................................................................................18
treatment.
Brand names of treatment products are provided for The Nurses’ Station – All About Me – A storybook for children
information only. They are not an endorsement of a particular
product or company by the writers or editors.
with bleeding disorders..................................................................................................19
Social Workers Face-to-Face – Parents Empowering Parents Program ........20
EDITOR TRANSLATORS THE BLOOD FACTOR
François Laroche Debby Dubrofsky News around the world..................................................................................................21
Sylvain Jobin
PRESIDENT Normand Latulippe
Craig Upshaw Marie Préfontaine
VOLUNTEER FILE
NATIONAL EXECUTIVE CONTRIBUTING WRITERS
DIRECTOR Clare Cecchini Chapter Relations Committee......................................................................................22
David Page Judy DesBrisay
Sue Ann Hawes, RN
EDITORIAL COMMITTEE Aline Landry
Hélène Bourgaize François Laroche
YOUTH FILE ............................................................................................................................22
Clare Cecchini Michel Long
François Laroche Hulda Niv, RSW
David Page David Page A GLOBAL PERSPECTIVE
Chantal Raymond Ryanne Radford
Chantal Raymond Storm warning: High winds, poor visibility (Egypt)..............................................23
PRODUCTION Corinda Smallman-Gallant
COORDINATOR Marion A. Stolte ATH – CHSQ twinning / December 2010 visit to Tunisia ....................................24
Chantal Raymond Candace Terpstra
Craig Upshaw Update on the TCOR – JHTS twinning (Jordan)......................................................26
GRAPHIC DESIGNER Dr. Elena Vlassikhina
Paul Rosenbaum Pamela Wilton, RN News update from South Africa ................................................................................26
COPY EDITOR
Debbie Hum
OUR STORIES
The story of “J” by Corinda Smallman-Gallant ......................................................27
CHS is now on facebook
www.hemophilia.ca Go to the CHS Web site to be directed to our facebook page.4 HEMOP HIL IA TOD AY e d i t o r i a l p a g e s M A R C H 2 0 11
François Laroche
Word overburdened with work and without time for patient
education. At best, education is provided outside the
from the centres, at events organized by the Quebec Chapter and
Editor attended by the professionals (summer camps, family
weekends, weekends for families affected by inhibitors,
etc.). However, education is crucial. There is just so much
to learn: self-infusion techniques, prophylactic measures,
how to select suitable activities given one’s condition,
how to calculate one’s factor level “x” amount of time
s mentioned in the Word from the Editor of our July after infusion... to only mention a few. All these things
A 2010 issue, the Quebec Chapter undertook a study
of the situation and needs of Quebec hemophilia
treatment centres (HTC), in close collaboration with
can help reduce bleeding episodes, save on factor
concentrates and improve quality of life. And what are we
to say about the lack of time for research and professional
medical personnel. This process consisted of a development…
standardized questionnaire lasting from 20 to 30 minutes, Our professionals, once again, are managing to keep
conducted by two CHSQ volunteers with 37 members the hemophilia health care system going, thanks to their
from the HTC multidisciplinary teams. From the invaluable competence and experience, and above all, a dedication
data collected, a report of over 25 pages was drafted, and that goes far beyond the call of duty. Once a model not
the professionals who only for the rest of Canada but
participated in the survey were for the entire world, Quebec’s
asked to comment on the report, hemophilia treatment centres
provide clarifications or suggest
We will make every effort are now slowly declining. We
additions. This feedback was to help ensure that our must put a stop to this. What
integrated into the final report, is worse, the deterioration is
which will be presented to devoted health care not limited to Quebec. The care
Quebec’s Minister of Health and standards evaluation published
Social Services, the Honourable professionals have the in 2010 by the Association of
Yves Bolduc. Incidentally, the Hemophilia Clinic Directors of
Quebec Chapter’s report will be resources they need to Canada showed that only 14 of
translated into English and Canada’s 25 HTCs have a full
made available to other chapters provide complete and complement of professionals
and regions that would like to and that team members do not
conduct similar evaluations. optimal care to those have enough time to fully
Without going into detail, I carry out their duties. The first
would like to highlight certain with bleeding disorders. independent evaluations of
findings, most already known Canada’s HTCs will be
prior to the study and in fact performed in 2011.
the reason for it. First, none of the four centres (if we For the moment, the problems observed have had
exclude the Quebec Centre for Inhibitors which shares its little impact on the quality of patient care, but it is only
resources with the Centre d’hémostase at Sainte-Justine a question of time before we start seeing tangible
Hospital) currently meet all of the Canadian consequences in the medium and the long term.
Comprehensive Care Standards for Hemophilia and Other Guaranteeing access to complete, optimal care for all
Inherited Bleeding Disorders adopted at Rendez-vous suffering from an inherited bleeding disorder has been
Québec in May 2007. The main shortcomings, which the number one priority of our organization’s mission
varied appreciably from one centre to the next, were since the very beginning. The strategic plan adopted in
insufficient time devoted to physiotherapy, lack of November 2010 focuses insistently on the whole
psychosocial support specialists in some centres, lack of question of care standards, the capacities of the HTCs
staff for CHARMS and HeliTrax® data entry and and the role of the CHS in fighting on behalf of the
management and, above all, a generalized lack of time for centres. We will make every effort to help ensure that
research, training and education—which I find, to say the our devoted health care professionals have the resources
least, very disturbing... they need to provide complete and optimal care to those
Generally speaking, our professionals seem to be with bleeding disorders.HEMOP HIL IA TOD AY e d i t o r i a l p a g e s M A R C H 2 0 11 5
Craig Upshaw find the plan extremely ambitious. It was clear to the
Message Board that some goals may prove to be a challenge for
from the chapters with more limited volunteer resources, and that
President a collective effort with support from the national
organization will be needed. However, based on all the
feedback, it was recognized by the designated directors,
who represent all the chapters, and the directors-at-large,
who collectively make up the CHS Board of Directors, that
this plan clearly targets critical issues for our community.
The CHS adopts comprehensive These include:
▪ optimal comprehensive care for all people with
strategic plan for 2011-2015! inherited bleeding disorders;
▪ access to a secure supply of the safest and most
ince my last message the strategic planning Steering efficacious therapies;
S Committee received final comments from the Board
and committee members, chapters, health care
professionals and key external stakeholders regarding the
▪ increased funding for research to improve treatment
and ultimately to find a cure;
▪ effective delivery of information and support to
patients and their families across Canada in both
2011-2015 strategic plan for the organization. The
suggestions were incorporated into the plan and English and French;
presented to the Board of Directors for discussion during ▪ greater awareness among people with inherited
the semi-annual board meeting on November 27. The bleeding disorders, their immediate communities and
Board wholeheartedly endorsed the five-year plan. (See health care providers.
pages 6 and 7 for a quick overview. The strategic plan in In order for this strategic plan to be a success, all
its entirety can be consulted at chapters need to strive to deliver on the goals that are
www.hemophilia.ca/en/about-the-chs.) most important to our membership.
With the five-year plan approved, the CHS and its The CHS biennial Rendez-vous will be held in Calgary
chapters now have a comprehensive roadmap to guide from May 26 to 29. Events include the Medical and
national committees and chapters in the development of Scientific Symposium, CHS Annual General Meeting and
annual work plans. This common vision will allow us to Board meeting, meetings of the four health care provider
strive to achieve the mission and goals of the organization. teams, and community workshops. At the Board meeting,
Those of you who read the plan and are active in your the CHS directors will come together to review the work
chapters will recognize that many of the objectives, key plans created by the committees as well as provide an
strategies and desired outcomes in the strategic plan are update on chapters’ plans to deliver on the strategic plan.
consistent with current chapter directions; this is no At that time we will have a clear picture of the
coincidence. The planning process involved significant successes that are already occurring, the challenges we
chapter and community involvement. The plan was need to overcome and the kinds of tools, training and
developed for the entire Canadian Hemophilia Society – planning that need to be put in place to move the
national organization organization forward.
and provincial chapters I am excited about
– in order to ensure Our Vision the adoption of the
that we are working 2011-2015 plan. I am
A world free from the pain and
collaboratively and suffering of inherited bleeding committed to working
cohesively to move our disorders. with all of you to
mission and vision collectively ensure that
forward. we further our mission
Our Mission
Some chapter to improve the health
The Canadian Hemophilia Society
leaders may look at this is committed to improve the
and quality of life of
plan and determine health and quality of life of all all people with
that they are already people with inherited bleeding inherited bleeding
disorders and ultimately to find
achieving a large a cure. disorders and
proportion of these ultimately to find
objectives. Others may a cure.6 HEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11
Canadian Hemophilia Society
Our Vision Our Goals
A world free from the pain Care and Treatment
Achieve optimal comprehensive care for all
and suffering of inherited people with inherited bleeding disorders.
bleeding disorders.
Awareness
Raise awareness among people with inherited
bleeding disorders, their immediate
Our Mission communities and health care providers.
The Canadian Hemophilia Society Research
Promote and fund research to improve
is committed to improve the health treatment and ultimately to find a cure.
and quality of life of all people with
Education and Support
inherited bleeding disorders and Provide effective delivery of information and
ultimately to find a cure. support to patients and their families across
Canada in both English and French.
Safe and Secure Supply
Advocate for access to a secure
supply of the safest and
most efficacious
therapies for treatment
of inherited bleeding
disorders.
Our Values
The Canadian Hemophilia Society is committed to
the following values:
Inclusiveness | Connectedness
Advocacy | Excellence | Integrity
Respect | CollaborationHEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11 7
2011-2015 Strategic Plan
Target Populations Our Global
The Canadian Hemophilia Society provides Responsibility
information, programs and services to…
While the primary mission of
OTHER HEALTH CARE PROVIDERS
the Canadian Hemophilia
(PRIMARY CARE PRACTITIONERS, Society is to work within our
DENTISTS , SPECIALISTS …)
own borders on behalf of
P ATIENTS ’ Canadians, we recognize our
COMMUNITY responsibility to work with the
World Federation of Hemophilia
HEALTHCARE PROVIDERS
FROM THE CANADIAN to further its mission of
COMPREHENSIVE CARE CLINICS TREATMENT FOR ALL.
F AMILIES
AND FRIENDS
P ATIENTS
WITH INHERITED
BLEEDING
DISORDERS
Our Governance Priorities
A Cohesive Organization
Build a cohesive organization through a combination of strong, effective chapters and better
collaboration between chapters and the national organization.
Increased Membership
Increase membership in both the chapters and the national organization.
A Culture of Philanthropy
Develop a culture of philanthropy among the expanded membership so as to be able to achieve
the mission and goals of the organization.
chs@hemophilia.ca www.hemophilia.ca8 HEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11
Hemophilia Saskatchewan
Chapter Spotlight On December 5, 2010, Hemophilia Saskatchewan had
its Family Christmas Party at the Radisson Hotel in
Saskatoon. It was a fun afternoon with water sliding, gifts
for the children, and dinner.
Manitoba Chapter The first two weekends in December, Hemophilia
Saskatchewan held The Old Elephant’s Christmas
The Manitoba Chapter identified the development of its fundraiser in conjunction with Brenda Baker, one
volunteer base as a priority in the chapter’s strategic weekend in Saskatoon and the other in Regina. These
planning process in 2008. The chapter had reduced staff were very successful concerts and a wonderful event for
from four positions to one part-time position as a result all who attended.
of the economic situation at that time. If the chapter was
to continue to offer services and programming at the level
we were used to, it was imperative that it would have to South Western Ontario Region (SWOR)
rely on volunteers to do the work.
In 2008, Ashley Tolton became the chair of the newly Wreaths, swags and pots fundraiser
created Manitoba Volunteer Committee. Finding We have had another successful year with our
volunteers to replace committee chairs and project leaders Holiday Wreaths fundraiser – response was amazing!
has been problematic in the past. The Volunteer This fourth year, our sales surpassed previous years with
Committee has tackled this problem in two ways: net profits of
awareness and training. Current volunteers have written approximately
job descriptions for their positions. New volunteer recruits $1,800. Thank you
know what jobs are available, what the work will be and to the Bow Elves
the time commitment required. who made it easy
2010 marks the first year that the Manitoba Volunteer for Kathleen
Committee has documented all of our volunteers and Hazelwood, Sam
their hours of work. The results were astounding! The Davis and Terri-
Manitoba Chapter has 12 Board members, 5 committees Lee Higgins to
with 21 members, 31 episodic volunteers, and 9 special pull together the
project volunteers. Eleven of our volunteers are not orders for pick up
Chapter members. Together, this amazing group of on a beautiful but
dedicated people logged 1,227 working hours. It is the cold winter
equivalent of having a paid staff, 23 hours a week. morning. Thank
Thank you to all the amazing volunteers, past and you to Michelle
present, who have gifted their time and talents to the and John Lepera
Manitoba Chapter. and Karen and
Chuck Catton for
coordinating sales
in both Windsor Unloading the truck for wreaths delivery.
and Chatham. You
were outstanding. And finally thank you to those who
sold, and those who purchased, the wreaths, door swags
and holiday pots this past holiday season. We will be
doing it again November 2011.
Winter Celebration 2010
On November 20, the bright sunshine helped ensure
that SWOR’s Winter Celebration was well attended. The
CHS Passport session, Bon Voyage! Travelling with a
Garage sale’s volunteers. Bleeding Disorder – which was designed to help reduceHEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11 9
the risks related to travelling for individuals and families Many thanks are extended to all of the parents who
with an inherited bleeding disorder – was the first openly shared their stories, and to Nicole for her
activity. Several youths helped with the handouts and willingness to share her experiences growing up.
the adults shared important hints and tips to help us
learn methods of ensuring safer travel. Upon completion
and prior to the amazing potluck lunch, families spread
out amongst the various activities: cookie decorating,
games, scrapbooking, face painting, cookies in a jar and
snowman cutout decorating. Too soon it was time to
hand out the grab bags and pack up the tables, another
year of fun and frolic in the books.
Special thanks to Janice and Bill for their work at the
hall, volunteers Supreet, Morgan and Hannah for the gift
of their time to keep the activities moving, and to
everyone who made the drive to Strathroy for the
Winter Celebration.
From left to right: Filomena Calabrese, Alfonso Calabrese, Sherry Meszaros,
Rachel MacPherson-Meszaros, Marvin Bauman, Leslie Bauman, Lesia Finstad,
Caroline Mulder-Sutton, Nicole Finstad, Alan Sutton and Alex McGillivray.
A trip to Christmas Town
On Sunday November 14, a total of 80 participants in
the Central West Region came out to enjoy a fun-filled
day at Mountsberg Conservation Area’s Christmas Town.
Families experienced a close community feel and took
part in the CHS’ new Passport to well-being module,
Travelling with a Bleeding Disorder. The presentation was
conducted by Kay Decker, hemophilia nurse coordinator,
Shannon MacKay, nursing student, Karen Strike,
physiotherapist, and Theresa Almonte, hemophilia
program secretary.
Kay and the clinic team had the families take part in an
interactive quiz based on the module’s slide show
Wijnker family decorating cookies.
presentation. The families also had a chance to enjoy a
horse-drawn buggy ride, pancake lunch, snowflake craft
and song time with Santa.
Central West Ontario Region (CWOR) Thank you to all of the Mountsberg staff for all of your
hard work and for making our group feel welcomed. Also,
Parents Education Day many thanks are extended to the clinic team for taking
The Parents Education Day was created to meet the time out of their weekend to educate and socialize with
needs of parents who expressed an interest to learn about the families at this great event. Thank you!
what it’s like for a child growing up with an inherited
bleeding disorder.
The parents met at Pillitteri Winery located in the heart
of Niagara-on-the-Lake’s beautiful wine country. The
program consisted of a facilitated discussion with
questions designed by Linda Waterhouse, social worker at
the Hamilton-Niagara Regional Hemophilia Clinic, and
Alex McGillivray, CWOR regional service coordinator, as
well as a tour of the winery. Parents had the opportunity
to share stories about their children and also ask one of
our youth representatives, Nicole Finstad, about her
experiences growing up with VWD. All the families enjoying their pancake lunch in Christmas Town.10 HEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11
’Twas the season!
Ottawa and Eastern Ontario Region A great time was had by all at the OEOR Holiday Party
on December 5, 2010. Children of all ages joined Board
(OEOR)
members of the OEOR at the Ottawa Police Association to
Camp Wanakita Registration Party play games, sing carols, do crafts, eat, drink and be merry!
On November 27, 2010, the Ottawa and Eastern This year’s party was the best ever as guests were treated
Ontario Region in conjunction with the Children’s Hospital to a terrific puppet show by Kids on the Block. Also, each
of Eastern Ontario held a very successful Camp Wanakita family decorated their very own gingerbread house to
Registration Pizza Party. Eight families attended to share take home as a special
information and fill in registration forms for camp. Diane souvenir. There were plenty
Bissonnette, our clinic nurse, did a presentation on camp of laughs and lots of good
and two of our more experienced campers, Jordon Cabral cheer as we shared the
and Cameron MacNeil, answered questions and did afternoon with several
commentary on the virtual tour slide show on Camp wonderful families in our
Wanakita. The day resulted in three new one-week community. A memorable
campers, five two-week campers and three counsellors-in- visit from St. Nick
training signed up to attend camp this August. completed the afternoon!
Nova Scotia Chapter
Curl for Hemophilia
What an exciting event was held in Nova Scotia! We had record turn outs, wonderful prizes for the teams, and after
3+ hours of curling on the ice, we were able to all settle in for a delicious chili and seafood chowder meal. There was
teamwork and cohesiveness among the members. At events like this, it is always nice to sit back and watch the members
interact and build stronger relationships. We also combined the Curl for Hemophilia with Volunteer Recognition. We had
over 70 volunteer recognition certificates to hand out. Everyone seemed to have had a wonderful day and it ended on a
note of appreciation from the NS Chapter – what a fantastic day!
Nova Scotia Hemophilia Youth Group – Building new become future volunteers in the Hemophilia Society. As
leaders everyday well as having fun, of course! We are so excited to get our
We are thrilled to announce that the Nova Scotia youth group up and running. We hope to see a lot of new
Chapter of the CHS is introducing a youth group for faces there along with lots of familiar faces! We will
young adults with bleeding disorders! This youth group is always be accepting to everyone in the bleeding disorder
aimed at directing these young adults onto a path to community.HEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11 11
monitors gave the eight youngsters a wonderful time
Quebec Chapter (CHSQ) filled with activities specially designed for them. The
Weekend for families living with inhibitors theme of the weekend was: Super Heroes. Crafts, a movie
The weekend for families living with an inhibitor took evening, swimming, creating musical instruments were
place last November in Orford. This year, five families were only a few of the activities organized. On Sunday, before
able to meet and share their experiences throughout the leaving, we got to see a wonderful show and a mural
weekend. Smiles and praise were on the menu and, right made by the youngsters. What a great gift!
from the first meal, the tables were separated. The We would like to thank Claude Meilleur, who ensured
children sat together and told the parents…“You have to the safety of the children, and Étienne and Vanessa for
sit over there!” having entertained the kids during their stay. And finally,
On Saturday morning, with the participation of a a special thank you to Dr. Georges-Étienne Rivard, who
specialist from a research firm, a workshop was held to travelled to the Eastern Townships to meet with the
evaluate needs. The objective of this session was to learn families on Friday evening.
about the concerns of families living with a child with an We’re already looking forward to seeing everyone again
inhibitor. This session helped us to better understand their next year!
daily realities in
order to better
meet their needs.
For the very first
time, on both
mornings, the
youngsters had a
lesson in self-
infusion with their
nurse, Claude
Meilleur, who took
advantage of this
opportunity to
teach them a bit
more about their
health condition.
It’s incredible how
much they know!
During the
weekend, two
NEW RESOURCE AVAILABLE
Challenges, Choices, Decisions: A Guide on Orthopedic Surgery for People
with Hemophilia
Almost all adults with severe hemophilia in Canada suffer from joint damage in the knees,
ankles and/or elbows because they grew up in a time when treatment was less advanced.
Chronic joint damage causes pain and limits range of motion. When the pain is severe and
interferes with the activities of daily living, orthopedic surgery is an option.
This educational resource, has been developed as a guide to help hemophilia patients, not
affected by an inhibitor, and their families understand what is involved in orthopedic
surgery. It has been adapted from the original booklet published in 2008 for people with
hemophilia and inhibitors. Available only as a pdf on the CHS Web site at
www.hemophilia.ca/en/educational-material. - C.C.12 HEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11
CHS western regional workshop: Rare Bleeding
Disorders Through the Lifespan
Judy DesBrisay, British Columbia On Friday evening, following Clare’s welcoming
comments, Manitoba’s Susan Gray, winner of the
ast November 5 to 7, my sister Sharon and I were introductory “ice breaker,” was presented with one of my
L among 32 participants at the CHS western regional
workshop, Rare Bleeding Disorders Through the
Lifespan. This event, sponsored by Novo Nordisk, was held
small paintings. Nora Schwetz, RN, then moderated a
lively panel presentation wherein Robert Burfoot-Lobo,
John Rogasky, Ryanne Radford and I shared our unique
at the Delta Airport Hotel, in Vancouver, British Columbia. experiences of living with a rare bleeding disorder across
People with rare bleeding disorders – including rare factor our varied life spans.
deficiencies (FI, FII, FV, FVII, Saturday’s busy agenda
FX, FXI, FXIII) and platelet began with Dr. John Wu’s
function disorders The 2010 workshop gave down-to-earth, well-
(Glanzmann Thrombasthenia, illustrated talk about
Bernard-Soulier Syndrome) – participants the chance to renew coagulation and rare
gathered from across bleeding disorders. Dr. Wu
Manitoba, Saskatchewan,
old acquaintances and forge new was joined by Dr. Shannon
Alberta, and British relationships within the broad Jackson and Dr. Linda Vickars
Columbia. Participants also in presentations about best
included some of their CHS community. Personal stories management for bleeds and
partners and the parents of medical procedures.
children with rare bleeding and information were exchanged Following these informative
disorders. Clare Cecchini, in a multitude of directions. talks we benefited from
CHS national program interactive roundtable
coordinator, eight health discussions with these three
care providers and a Novo Nordisk representative joined very knowledgeable and approachable experts.
us for the proceedings. Sandra Squire, physiotherapist, presented us with her
The 2010 workshop gave participants the chance to wide-ranging perspective and expertise about the
renew old acquaintances and forge new relationships benefits of a healthy lifestyle which includes physical
within the broad CHS community. Personal stories and activity throughout our lives. Sandra also led us through a
information were exchanged in a multitude of directions. stress-relieving and giggle-promoting tai chi session. The
last afternoon session
saw Daniel Sirivar,
RSW, Nora Schwetz,
RN, and Claude
Bartholomew, RSW,
hosting small group
discussions on topics
which focused on
specific life-stage
concerns. Our
exchange of ideas
continued throughout
the delicious dinner
we savoured at an
adjacent restaurant
with a sparkling
marina vista.
From left to right: Judy DesBrisay, Nora Schwetz, RN, John Rogasky, Dr. John Wu, Robert Burfoot-Lobo and Clare Cecchini. Following ourHEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11 13
proof that the Canadian Hemophilia Society CARES.
CARES is the acronym for the Canadian Hemophilia
Society’s strategic directions and stands for: Care and
Treatment, Awareness, Research, Education and Support,
Safe and Effective Therapies.
At midday, reluctant farewells were made. Clare
acknowledged the work of the CHS planning committee
and expressed our thanks to Novo Nordisk whose
representative, Daniel Brinza, joined us at the workshop
with much good will, printed resources and T-shirts. Our
interactive community continues its dialogue and activities.
The Factor V Ladies: Sharon and Judy DesBrisay and Ryanne Radford The education and support provided at this workshop
Sunday morning breakfast, Deb Gue, RN, and Nora were beneficial for my sister and me. We were delighted to
Schwetz, RN, led us through two highly appreciated share our diverse “mature years” and experiences of factor
interactive sessions with “must know” insight and V deficiency with the ebullient young Ryanne Radford,
information for Travelling with a Bleeding Disorder and who lives quite differently with her factor V deficiency.
Navigating the ER. Dr. Wu and Clare Cecchini then This winter seems warmer when we reflect upon our
prompted us to Get Involved with the Rare Bleeding participation in the western regional workshop on rare
Disorders Registry and research, and with the CHS at the bleeding disorders and its outcomes. The Canadian
national or provincial levels. Volunteer opportunities Hemophilia Society deserves a rousing round of applause
abound and are widely acclaimed by those involved. Clare, for their planning and presentation of yet another
whose work is well recognized and appreciated, stands as collaborative and successful venture.
The gift of life… 1,000 times!
acques Paquin is an ordinary
J man who achieved an
extraordinary thing. He gave
blood and blood products 1,000
times! Inspired by his nephew, our
very own Hemophilia Today editor
François Laroche, the 55-year-old
man started giving blood when he
was 18 years old. He has never
stopped since then. “I was what
inspired him at first, the triggering
factor of this outstanding feat,
stated François, but he deserves
our full admiration for his
availability, his altruism and
abnegation. Through his gesture
— repeated 1,000 times! — he On February 14, 2011, François Laroche accompanied his uncle, Jacques Paquin, for his 1001st gift of life.
contributed in helping, and
possibly saving the lives of hundreds or perhaps even amazing gift of life on a weekly basis.
thousands of people. I am very proud of my uncle.” Mr. Paquin is only the second person in Canada to have
About 18 years ago, when plasma donations became donated blood 1,000 times. In fact, such dedication is rare
possible, he chose this option, allowing him to give this worldwide. Jacques Paquin is no ordinary man after all… - C.R.14 HEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11
2008-2010 REPORT CARD ON CANADA’S BLOOD SYSTEM
REPORT CARD
Blood system very safe but accountability takes giant
step backwards
he 2008-2010 report on Canada’s blood system, unavailable, despite licensure by Health Canada in 2006, a
T prepared by the Canadian Hemophilia Society (CHS),
was released on January 27, 2010. It has found that
blood, blood products and their alternatives are very safe
lower risk of blood-borne pathogens and adverse reactions
compared to fresh frozen plasma, and the fact that SD-
plasma is the standard of care in many European countries.
and in sufficient supply; however, the system’s accountability The September 2010 decision by Justice Aitken of the
to recipients has taken a giant step backwards. Ontario Superior Court in the case of CBS vs. Freeman was
According to Canadian Blood Services (CBS) by-laws, welcomed by recipient organizations. The judgment found
and following recommendations of the 1997 Krever Report that current donor deferral criteria for men who have had
on Canada’s Blood System, two of the 12 CBS Board sex with men are not discriminatory. As a result, decisions
positions are reserved for persons with “relevant on screening procedures will continue to be made on the
knowledge or experience with organizations representing basis of the latest science and epidemiology.
persons consuming blood and blood products.” Over the The period covered by this report also saw the adoption
last decade, almost all of these positions of legislation in Quebec to provide no-fault
have been held by individuals with very close compensation in the event that persons are
links to recipient organizations and extensive injured following a transfusion or transplant
knowledge of safety and supply issues. The 2008-2010 of products distributed by Héma-Québec.
However, during the 2009 and 2010 Board Such a measure was the first
renewal process, the Members of CBS, the Report on Canada’s recommendation of the Krever Commission.
provincial/territorial Ministers of Health Blood System is the The other provinces and territories are
(except Quebec), named both “public relying on CBS’ self-insurance scheme to
directors” with no apparent links to recipient fifth to be released provide compensation in the event of
organizations and little knowledge of key another tainted blood tragedy.
since the reform of
issues from a recipient perspective. A Unfortunately, the last three years have
number of recipient organizations have the blood system in seen little progress in the development of a
denounced the selection process as lacking national Orphan Drug Policy that would
transparency and resulting in the exclusion 1998 following the facilitate the licensure and availability of
of an effective recipient voice at the top Krever Commission. therapies for rare diseases. Canada is the only
level of decision-making at CBS… to no highly developed nation without such a policy.
avail. Members of recipient organizations see In addition, the Public Health Agency of
their exclusion as a clear contravention of Canada has, without notice or explanation,
CBS’ own by-laws, and a giant step backwards in stopped funding the Blood-Borne Pathogen Surveillance
accountability. Project at the University of Alberta. This bank of blood samples
Meanwhile, Héma-Québec has maintained Board positions from frequently transfused individuals is critical to effective
for individuals with a recipient organization perspective. monitoring of emerging pathogens in the blood supply.
On a more positive note, the report finds that CBS, The 2008-2010 Report on Canada’s Blood System is the
Héma-Québec and Health Canada (the regulator of the fifth to be released since the reform of the blood system in
blood system) have maintained a clear focus on safety. 1998 following the Krever Commission. In its preparation,
Blood and blood products are safer today than at any time the Canadian Hemophilia Society sought input from
in the past. recipient organizations, Health Canada, manufacturers of
The provinces and territories continue to fund the fresh blood components, Canadian Blood Services and
suppliers of blood, blood products and their alternatives in Héma-Québec. The 2008-2010 report card and the four
such a way that they can provide life-saving products to previous report cards can be found on the CHS Web site at
Canadians in sufficient supply… with one exception. www.hemophilia.ca/en in the Safe, Secure Blood Supply
Solvent-detergent treated plasma (SD-plasma) is still section.HEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11 15
2008-2010 REPORT CARD ON CANADA’S BLOOD SYSTEM
REPORT CARD
Grades A Excellent performance, no criticism
B Very good performance, room for improvement
C Room for considerable improvement
D Not very good performance
F Serious problems
2003-2004 2005-2007 2008-2010
Safety A A A
Supply A A A-
Plasma self-sufficiency C C B
Canadian Blood
Services Project recovery — — A
Board appointments — — F
Accountability and transparency A A B
CBS’ blood donors A A+ A+
Safety A A A
Supply A A A
Plasma self-sufficiency D C C
Project recovery — — A
Héma-Québec
Board appointments — — A
Accountability and transparency A A A
No-fault compensation — — A
Héma-Québec’s blood donors A A+ A+
Commitment to safety — — A
Approval of biological therapies C B B
Federal Orphan drug policy — D D
Government Standards for blood
B B B
and blood components
Surveillance C B- F
Canada’s Justice — F A
System
Quebec: A
Accountability and transparency — — Other provinces
and territories: F
Quebec: A
Funding of the blood system A Other provinces
B
and territories: B
Provincial
and Territorial D C
Comprehensive care for rare disorders —
Governments
Quebec: A
No-fault compensation — D Other provinces
and territories: D
Quebec: A
Hemovigilance Quebec: A Quebec: A Other provinces
and territories: C16 HEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11
NOTICE ▪ To receive the report of the Nominating Committee.
▪ To acknowledge the designated directors of each chapter.
The Annual General Meeting of ▪ To nominate candidates for the director-at-large positions on the CHS Board for
the Canadian Hemophilia Society 2011-2012.
will convene as follows: ▪ To receive the audited financial statements of the Canadian Hemophilia Society
for the year ended December 31, 2010.
▪ To appoint an auditor for the ensuing year.
Saturday, May 28, 2011 ▪ To receive the report of the Hemophilia Research Million Dollar Club.
8:30 a.m. ▪ To transact such other business as may properly come before this Annual General
Delta Bow Valley Hotel, Meeting of the members of the Canadian Hemophilia Society.
Calgary, Alberta Aline Landry, secretary
Longest Parade of Motorcycles. Single riders can register for
Upcoming $35, with a passenger $45 (register online at
Events www.ridefortherecord.com). This event is our opportunity to
raise awareness of inherited bleeding disorders and much
needed funds to achieve our mission.
▪ August 24-28, 2011 – Pinecrest Camp - The only camp in
CANADIAN HEMOPHILIA SOCIETY Ontario specifically designed to meet the special medical
▪ April 30, 2011 – Deadline to submit an application for the needs of children with a bleeding disorder which includes their
CHS James Kreppner Memorial Scholarship and Bursary siblings, offers knowledgeable and specially-trained volunteer
Program. staff (medical, co-directors and counsellors) on site 24 hours
▪ May 26-29, 2011 – Rendez-vous 2011. Medical and Scientific per day. Watch future newsletters and mailings for details.
Symposium, community development workshops, and CHS
Annual General Meeting. Q U E B E C C H A P T E R (CHSQ)
▪ April 16, 2011 – Bowl-a-thon in Sorel-Tracy.
ALBERTA CHAPTER ▪ May 1, 2011 – Bowl-a-thon in Montreal.
▪ June, 2011 – The Alberta Chapter will host its most popular
event: Family Day and the Calgary Zoo. This event includes a BBQ
and a chance to get up close and personal with a zoo animal! World Hemophila Day
E V E N T S
HEMOPHILIA SASKATCHEWAN
▪ March 26, 2011 - AGM, Mayfair United Church, Saskatoon.
ALBERTA CHAPTER
MANITOBA CHAPTER ▪ April 17, 2011 – The Alberta Chapter will have a display set up at
the Alberta Children’s Hospital.
▪ April 4, 2011 - Family Camp Registration, 9:15 a.m. until full.
▪ April 16, 2011 – Annual General Meeting (details to come).
S OUTH W ESTERN O NTARIO R EGION (SWOR)
HEMOPHILIA ONTARIO ▪ April 17, 2011 - Are you brave enough to take the plunge?
Celebrate World Hemophilia Day with us by jumping in a lake!
▪ April 16, 2011 - Hemophilia Ontario Annual General Meeting. Again this year, SWOR is recognizing April 17 with a Polar
Bear Dip. Your help raises funds to support programs for the
S OUTH W ESTERN O NTARIO R EGION (SWOR) more than 300 people living with hemophilia, von Willebrand
disease and other bleeding disorders and their families living
▪ June 10-12, 2011 – New youth / Family program Prelude to
in South Western Ontario. Pledge Forms are available online at
Pinecrest has been developed to help potential campers and
www.lhsc.on.ca/About_Us/Bleeding_Disorders/SWOR.
their families learn more about camp by experiencing a day in
For more information or directions, contact Terri-Lee at
the life of Pinecrest Camp. Youth aged 4 to 16 not currently
519-432-2365 or thiggins@hemophilia.on.ca.
participating in camp are invited to attend and participate
with their families.
▪ July 30, 2011 - Guinness Book of World Records Ride in SWOR! PRINCE EDWARD ISLAND CHAPTER
Become part of history! SWOR invites you to participate in our ▪ Run for It event. Contact your chapter for more information
attempt to set a Guinness Book of World Record for the at cjcraig1@pei.sympatico.ca.HEMOP HIL IA TOD AY c o m m u n i t y n e w s M A R C H 2 0 11 17
The Canadian Hemophilia Society
RENDEZ VOUS is pleased to invite you to attend
CALGARY
MAY 2 6 -2 9
NEW CHALLENGES
2011 Rendez-vous 2011 which will be held
May 26-29, 2011 in Calgary.
his important event will feature the Medical and SCHEDULE OF EVENTS
T Scientific Symposium: New Challenges in the Care of
People with Bleeding Disorders, the CHS Annual
General Meeting, informative community development T H U R S D AY , M AY 26, 2011
workshops and annual meetings of the four health care
9:00 – 17:00 CANHC annual meeting
professional groups.
Rendez-vous is jointly organized by the Canadian 9:00 – 17:00 Canadian Pediatric Thrombosis and
Hemophilia Society (CHS) and the members of the Hemostasis Network
Association of Hemophilia Clinic Directors of Canada
(AHCDC), the Canadian Association of Nurses in
Hemophilia Care (CANHC), the Canadian Physiotherapists F R I D AY , M AY 27, 2011
in Hemophilia Care (CPHC), and the Canadian Social 9:00 – 17:30 Medical and Scientific Symposium
Workers in Hemophilia Care (CSWHC). Rendez-vous 2011 New Challenges in the Care of People
is presented by Bayer HealthCare and Pfizer and with Bleeding Disorders
sponsored by Baxter, CSL Behring, Novo Nordisk, Biogen
17:30 – 18:30 Reception in exhibit area
Idec Hemophilia and Octapharma.
This year the Medical and Scientific Symposium will 18:30 – 22:00 AHCDC dinner meeting
be presenting sessions on aging with a bleeding disorder,
mild hemophilia and rare bleeding disorders. Three
community development workshops will be offered: S A T U R D AY , M AY 28, 2011
Drive Your Car/Drive Your Care youth workshop, 8:30 – 9:30 CHS Annual General Meeting
Implementation of the CHS Strategic Plan workshop and
8:30 – 17:00 CPHC and CSWHC annual meetings
Aging with a Bleeding Disorder focus group.
This biennial conference will explore state-of-the-art 9:00 – 17:00 Joint CANHC and AHCDC Scientific
advances in treatment and research benefiting people with & Educational Meeting
inherited bleeding disorders. Attending this invaluable 9:45 – 12:00 Workshop: Implementation of the
meeting gives you the rare opportunity, in only one CHS Strategic Plan
weekend, of gaining new knowledge at the medical and
9:45 – 17:00 Youth Committee event: Drive Your
scientific sessions and community development workshops,
Car/Drive Your Care
networking with peers and friends, visiting the
pharmaceutical industry exhibits and participating in your 13:00 – 17:00 CHS Board of Directors meeting
organization’s Annual General Meeting. 13:00 – 17:00 Aging with a Bleeding Disorder
We hope to bring together as many people as possible focus group
from the bleeding disorder community. The CHS will be
19:00 Banquet and CHS Awards
sponsoring twenty participants to attend and chapters are
strongly encouraged to sponsor as many members as possible.
For more details, please consult the CHS Web site at
S U N D AY , M AY 29, 2011
www.hemophilia.ca or contact your local chapter. We
hope you can join us! - C.R. 9:00 – 12:00 CHS Board of Directors meeting18 HEMOP HIL IA TOD AY m e d i c a l n e w s M A R C H 2 0 11
virus infection, according to a German study.
Medical www.hivandhepatitis.com/2010_conference/aasld/docs/
1214_2010_a.html
News
Artificial liver device improves survival for hepatitis
B and C patients with decompensated disease
An artificial liver device known as ELAD – which runs a
Hepatitis & HIV patient’s blood through cartridges containing human liver
cells – conferred a significant survival advantage for
Press Review people with acute decompensated liver disease related to
chronic hepatitis B or C, according to a Chinese study.
Michel Long After three years, 44 per cent of ELAD users were still alive
CHS National Program Coordinator without liver transplants, compared with 18 per cent in
and Dr. Elena Vlassikhina the standard therapy group.
Volunteer collaborator www.hivandhepatitis.com/2010_conference/aasld/docs/
1214_2010_c.html
HIV-positive people may need triple dose of
Kidney transplants found safe in HIV patients
hepatitis A vaccine
People infected with HIV can safely receive a kidney
transplant, researchers reported in the New England People with HIV require three doses of hepatitis A virus
Journal of Medicine. The finding is good news for people (HAV) vaccine to achieve the same level of antibody
with the virus, who are more prone to kidney disease in protection that HIV-negative people can get with two
part because of the drugs they must take to stay healthy. doses, according to a study presented at the 50th ICAAC
www.reuters.com/article/idUSTRE6AH3RQ20101118 conference in Boston. HAV antibody response was
particularly weak among HIV-positive men with a CD4
Advances made in developing hepatitis C vaccine count below 200, all of whom needed the third vaccine
Preliminary clinical trials are showing that a so-called booster dose.
therapeutic vaccine can boost the immune response in www.hivandhepatitis.com/2010_conference/icaac/docs/
those infected with the hepatitis C virus (HCV). Still, a 1026_a.html
viable vaccine is a decade away.
www.montrealgazette.com/health/Advances+made+ HIV co-infection does not worsen liver transplant
developing+hepatitis+vaccine/3866477/story.html outcomes in people with hepatitis B or C
HIV-positive liver transplant recipients with HBV or HCV
Drinking more coffee linked to improved response to co-infection did not fare worse overall than HIV-negative
hepatitis C treatment transplant recipients, according to a Spanish study.
Higher coffee consumption was associated with greater Co-infected patients were less likely to experience organ
likelihood of response to hepatitis C treatment in a HALT-C rejection, but HCV recurrence was a leading cause of
trial, which looked at prior non-responders with advanced adverse outcomes.
liver disease. People who drank more coffee were more www.hivandhepatitis.com/2010_conference/icaac/docs/
likely to achieve early and sustained virological response 1008_b.html
to pegylated interferon plus ribavirin. Effects were
strongest for consumption of three or more cups of coffee Hepatitis C breakthrough could lead to cure
per day. University of Alberta researchers, led by neurologist
www.hivandhepatitis.com/2010_conference/aasld/docs/ Dr. Chris Power, discovered how the hepatitis C virus
1203_2010_a.html damages brain cells. Their discovery opens the door for
developing better treatments, possibly even a cure. Power
Pre-treatment with ribavirin improves response to said it could even open the door to a hepatitis C vaccine.
interferon-based therapy for hepatitis C It’s long been known that some hepatitis C sufferers have
Ribavirin “priming” – starting ribavirin monotherapy memory loss and poor concentration. The researchers
before adding pegylated interferon – was associated with discovered why: the virus attacks the brain cells
a small but significant improvement in sustained responsible for motor functions, memory and
virological response in patients with chronic hepatitis C concentration. It also causes inflammation, whichHEMOP HIL IA TOD AY m e d i c a l n e w s M A R C H 2 0 11 19
damages more brain cells, or neurons. “Now we have some side effects. If the U.S. Food and Drug Administration
understanding about the cause of these neurological approves the drugs – a decision widely expected this
symptoms, which can lead to the development of future summer – they would be the first that work by directly
treatments,” Power says. targeting the hepatitis C virus. “The future looks very
www.edmontonsun.com/news/columnists/ bright beyond telaprevir and boceprevir,” notes Dr. Fred
andrew_hanon/2010/10/05/15594016.html Poordad, pointing to additional drugs in earlier-stage
testing that promise to target more types of hepatitis C
New drugs carry hope for hepatitis C cure and perhaps eventually allow for pill-only, interferon-free
Today’s two-drug treatment for HCV cures only about 40 treatment. Given that two-thirds of hepatitis C sufferers
per cent of people with the most common variety of the are thought to be baby boomers, what could be a
virus, and causes some grueling side effects. Now major treatment revolution is spurring the U.S. government to
studies show adding a new drug – either Vertex consider if it’s time to start screening aging baby boomers
Pharmaceuticals’ telaprevir or Merck’s boceprevir – can for hepatitis C, just like various cancer checks.
boost those cure rates as high as 75 per cent. And they www.floridatoday.com/article/20110118/LIFE01/
allow some people to cut treatment time in half, to six 101180306/1086/New+drugs+carry+hope+for+
months, thus lessening how long they must deal with the hepatitis+C+cure
Canadian Association of highlights the theme
Nurses in Hemophilia Care that a child can tell his
The or her own bleeding
disorder story to his/her
Nurses’ Station classmates. The book
Sue Ann Hawes, RN, BN can be personalized as
Pediatric Bleeding Disorder Nurse Coordinator the cover has an
IWK Health Centre, Halifax, Nova Scotia opening for the child’s
Submitted on behalf of the Atlantic Region, Canadian picture and, on the
Association of Nurses in Hemophilia Care (CANHC) front page, a spot to
write the child’s name
and type of bleeding
All About Me – A storybook for disorder. The theme
throughout the book
children with bleeding disorders “Please don’t worry” is
designed to help alleviate fears that classmates may have
sing a collaborative approach, the Atlantic
U
towards the child’s bleeding disorder. The book describes
Hemophilia Nurses group, a family and a very scenarios of bleeding episodes from a child’s perspective
talented artist created a storybook for children and is accompanied by illustrations to provide
with bleeding disorders. The idea for this book stems from visualization. All About Me is written in children's
an individual family’s experience with hemophilia and language to ensure that a child with a bleeding disorder
acknowledgment goes to this family – Suzanne, Jacob and feels comfortable sharing information with classmates in
Austin Shaw. Suzanne, a school teacher and busy mom of an interactive way.
two boys with hemophilia, put together some information The majority of this project was done through WebEx, a
to help her sons share their bleeding disorder experiences very useful tool enabling nurses from different provinces
with their classmates. This idea was catchy and as a result the ability to work together. The illustrations for this book
the Hemophilia Nurses of Atlantic Canada, with Suzanne’s were designed by Majella Sharpe, an artist in
permission, took on a regional project and developed a Newfoundland. She was wonderful to work with and had
children’s storybook. great ideas for the book. Thank you to Bayer HealthCare
The storybook is designed to provide young school-age for funding this project.
children with bleeding disorders the opportunity to share If you would like a copy of the storybook All About Me,
information about his or her medical condition with please contact your local hemophilia clinic nurse or the
his/her classmates. The title of the book, All About Me, CHS national office.20 HEMOP HIL IA TOD AY m e d i c a l n e w s M A R C H 2 0 11
the U.S. to introduce the program to our members with
Canadian Social Workers in
Hemophilia Care the goal of determining if it would meet the needs of the
Canadian bleeding disorders community. As the day went
by, the social workers were extremely impressed as it
Social Workers appeared that the PEP Program could be a valuable tool
Face-to-Face for empowering parents of children with bleeding disorders.
The PEP Train-the-
Hulda Niv, MSW, RSW, Southern Alberta Pediatric Trainer workshop, held
Oncology and Bleeding Disorder Program in Montreal in October
Alberta Children’s Hospital 2009, included parents
from across Canada
who volunteered to
Parents take part in this
exciting process. The
Parents Empowering recommended first PEP workshop was
that the PEP launched in Alberta in
Parents Program program be
March 2010 and was
very well received by
the parent participants.
continued in To date, feedback from
Canada to open participants from
Manitoba, Ontario and
this learning the Maritimes describe
the PEP activities as
opportunity to very successful.
all parents of Overall, although
most parents were
children with already well educated
about bleeding
bleeding disorders, they
disorders. expanded their
knowledge and
benefited from the
interactions, learning
uring the May 2008 annual meeting of the Canadian
D
and bonding with other parents who have similar
Social Workers in Hemophilia Care (CSWHC) that experiences. Parents expressed gratitude to be part of this
took place in Saskatoon, the social work group was valuable program and encouraged other parents to attend
introduced to the Parents Empowering Parents (PEP) a PEP workshop. “I believe in this program, and feel that
program.The PEP Program was developed in 1996 and is there are so many more families out there that could
designed specifically for parents of children with bleeding benefit from it. I have over the last year spent many
disorders. It is sponsored by Bayer and facilitated by a group weeks reaching out to find people that are going through
of health care providers in the United States. The PEP model the same thing as us. I have made so many close friends
allows parents of children with bleeding disorders to share and connections and this was probably the most
their expertise, promote the concept of self-empowerment, effective,” said Jennifer, on March 31, 2010.
and provide support to meet the psychosocial needs of Parents recommended that the PEP program be
other parents. With trained parents and HTC social workers continued in Canada to open this learning opportunity to
and nurses as integral members, the PEP training team all parents of children with bleeding disorders.
models the collaboration between parents and professionals Plans are underway to host PEP workshops in 2011.
in the comprehensive care setting. Parents who are interested in learning about the program
Knowing that the PEP program has been implemented and interested in attending the workshops should contact
in several countries around the world, the Canadian Social their HTC social worker, or the CHS national program
Workers in Hemophilia Care team invited facilitators from coordinator, Clare Cecchini, at 1-800-668-2686.You can also read
