WORLD HEMOPHILIA DAY IS APRIL 17, 2021
Submitted by Barbara Sheridan, Clinical Coordinator, Adult Bleeding Disorders Program
World Hemophilia Day aims to promote the importance of taking coordinated and concerted actions to achieve the WFH vision of “Treatment for all” and draw attention to the key issues and put hemophilia and bleeding disorders in the spotlight.
The theme of the event this year is “Adapting to change: sustaining care in a new world”. This important event is about bringing the global bleeding disorders community together. With the COVID-19 pandemic having a major impact on people with a bleeding disorder, that objective has never been more important.
Our community is made up of a great diversity of people—from patients and their families, to careers, physicians and researchers—each of whom has been affected by the pandemic in a different way. We need to continue providing support to these people now, and in the future once the pandemic has passed. The world has changed greatly over the last year, but one thing hasn’t: we are still in this together, and we will always be stronger together as a community in our shared vision of “Treatment for All”.
About World Hemophilia Day
Since 1989, patient groups worldwide have annually marked World Hemophilia Day on April 17 to raise the awareness and understanding of hemophilia and other bleeding disorders. The date was chosen in honor of WFH founder Frank Schnabel, who was born on that day.
Background of the Adult Bleeding Disorders Program of BC/Yukon
This program operates out of St. Paul’s Hospital in Vancouver British Columbia. Our program provides care to people with inherited bleeding disorders such as Hemophilia and von Willebrand Disease. This provincial program has operated in British Columbia since 1972 and, the adult division, at St. Paul’s Hospital since 2004. It is a unique clinic because of the longstanding foundation of interdisciplinary care which has been shown to improve patient outcomes when compared to care by an individual hematologist or internist.
In a US study, this interdisciplinary approach has been found to reduce mortality in the bleeding disorders population by 40%. Our team includes three hematologists, two nurse practitioners, a social worker, physiotherapist, clinical coordinator, research assistant and a secretary.
There are approximately 600 adult patients with bleeding disorders who are registered with the clinic who live all over BC and the Yukon. We provide comprehensive care for patients and families with mild to severe hemophilia A and B, VWD, platelet disorders, undefined bleeding disorders and rare factor deficiencies in a value based health care model.
Most of the work is done outside of a clinic visit in the form of guidance around management of acute bleeds, provision of factor concentrates for self-infusion for ~120 patients, management of surgical and dental procedures (150-200 yearly) and teaching.
To reach patients who are unable to travel to Vancouver, the interdisciplinary team currently conducts virtual visits and 4-5 outreach clinics per year; Kelowna, Victoria, Nanaimo and Prince George (done virtually during Covid-19 pandemic).
There is a pediatric division operated at BC Children’s Hospital where many patients with hereditary bleeding disorders such as hemophilia are diagnosed as infants and children. These individuals are then transitioned to the adult program when they are 17-19 years of age.
The Adult Bleeding Disorders Program of BC/Yukon is part of a Canadian network of 25 other Hemophilia Treatment Centers. This network facilitates Canada-wide universal care for these rare disorders, research, a national registry for data collection for coagulation factor concentrates and many other programs For more information please visit our website at www.hemophilia.providencehealthcare.org
If you need to reach PHC’s Infection Prevention and Control Team (IPAC), please call local 69357. Do not contact individual IPAC team members.