OTTAWA – In a display of solidarity with Canadians living with rare genetic blood disorders, Dr. Kirsty Duncan tabled her Private Member’s Bill on December 13, 2010 calling on the government to create a comprehensive National Strategy for Sickle Cell Disease and Thalassemic Disorders.
“Sickle Cell Disease is a painful and fatal genetic blood disorder that affects approximately 100,000 people in North America,” said Dr. Duncan “People living with sickle cell disease are extremely vulnerable to infection, and have periodic health crises that cause great pain and difficulty breathing.”
“Patients with sickle cell, thalassemia and related blood disorders are doubly, even triply disadvantaged in terms of health services. These are rare life-threatening diseases that mostly affect visible minorities and immigrants,” said Durhane Wong-Rieger, President Canadian Organization for Rare Disorders. “A national strategy for diagnosis and care is essential to assuring equitable and effective health and social services.”
Dr. Duncan’s bill calls for a national strategy to comprehensively manage affected patients to improve outcomes, while implementing measures to reduce the incidence of these disorders. The bill also aims to address the challenges faced by children and adults living with these diseases, and their families, as well as raise awareness of these disorders.
“A National Strategy for these disorders would be very helpful to thousands of Canadians,” said Liberal MP Marlene Jennings. “Some of my relatives have personal experience with sickle cell disease, and it can be hard to deal with without support.”
“With current immigration trends, nearly three quarters of new immigrants to Canada come from areas of the world where sickle cell disease or thalassaemias are most common. Thus, the numbers of patients with these disorders in Canada will increase with time,” said Dr. Isaac Odame, Chair of the Canadian Haemoglobinopathy Group. “A national strategy to comprehensively manage affected patients to improve outcomes, while implementing measures to reduce the incidence of these disorders is the right course of action and should not be delayed any further.”
“Since I lost childhood friends to Sickle Cell Disease I have never turned down an opportunity to tell people about this fatal blood disorder and the importance of finding a cure,” concluded Dr. Duncan.
Click here to read Bill C-605