Living with hemophilia: How the Canadian Hemophilia Society advocates for a better future
For individuals living with hemophilia, the challenges they face on a daily basis can be overwhelming. From the constant concern about bleeding episodes to the limited accessibility of proper treatment, those with this inherited bleeding disorder often find themselves navigating a complex and demanding landscape. However, organizations like the Canadian Hemophilia Society are working tirelessly to provide support and improve the lives of patients worldwide.
The Canadian Hemophilia Society advocates for the health and quality of life of all Canadians living with a bleeding disorder. The organization strives to enhance the comprehensive care available to patients and ensure access to the safest and most effective coagulation products until universal cures are developed.
David Page, who now serves as a consultant to the Canadian Hemophilia Society, knows firsthand about living with hemophilia. David has severe hemophilia B and he suffers from hemophilic arthropathy in multiple joints.
David’s diagnosis led him to a career with the Canadian Hemophilia Society in hopes of supporting others living with hemophilia and making a difference. He served as a volunteer for 20 years while working in the educational field, and then took on a staff role in 2002, eventually becoming the Canadian Hemophilia Society’s Executive Director in 2006.
Since 2016, he focuses on issues related to care and treatment in Canada and volunteers in different capacities with the World Federation of Hemophilia (WFH), including as chair of the WFH Coagulation Products Safety, Supply and Access Committee from 2001 to 2016.
“My focus is to help the organization advocate for an optimal level of comprehensive care for bleeding disorders in Canada’s network of 26 treatment centers and for access to the safest and most efficacious coagulation products,” David explained.
Addressing misconceptions surrounding hemophilia, David emphasized the need for education. He explained, "The most common misconception (and complaint) is that hemophilia and other bleeding disorders affect only males. We have a lot of work to do to educate healthcare providers so that girls and women with bleeding disorders can receive timely diagnoses and effective treatment.”
From a global perspective, many challenges remain for people living with hemophilia, including access to trained health care providers and treatment products.
“Sadly, these are still a dream for three-quarters of those with bleeding disorders,” David said. “In Canada, we are extremely fortunate in this regard; however, maintaining comprehensive care and gaining timely access to novel therapies remain challenges.”
In supporting patients with hemophilia, organizations like the International Society on Thrombosis and Hemostasis (ISTH) play a crucial role. David stated that the ISTH can best support people living with hemophilia by continuing to be an agent of knowledge transfer related to inherited bleeding disorders with healthcare providers and by facilitating awareness of the patient perspective in health outcomes.
Living with hemophilia is undoubtedly a challenging journey, but the efforts of organizations like the Canadian Hemophilia Society give hope to those affected. Through their advocacy, education and dedication to improving the quality of life for patients—and with advocates like David Page at the helm—there is hope for improved comprehensive care and treatment that are accessible to all.