Sickle Cell Disease is the most common genetically inherited disease in Canada. It is a severe, congenital disorder of the red blood cells, affecting individuals from diverse ethnic backgrounds – Mediterranean, African, Caribbean, Middle East, South America, and South Asia. More than 6000 Canadians and 3500 Ontarians are affected, and that number is increasing annually in large part due to migration from countries with high disease prevalence, as well as a natural increase within Canada from parents who carry sickle cell disease genetic traits.
Sickle Cell Disease can be a debilitating illness and people suffering from Sickle Cell Disease often experience negative health outcomes- compared to people who do not live with SCD. This is further exacerbated by structural and systemic inequalities in our healthcare system. For example, individuals with the disease presenting in Canadian hospitals with vaso-occlusive crisis (painful episode representing the hallmark of the disease) are sometimes treated as drug seekers. This is especially true of ethnic minorities.
September is Sickle Cell Awareness Month and the Sickle Cell Group of Ontario (SCAGO) is dedicated to bringing awareness to the lived experiences of people who live with Sickle Cell Disease and the attendant health inequities. SCAGO is committed to addressing the factors that contribute to negative health outcomes for people living with Sickle Cell Disease. As part of our mandate to provide recent, accurate information and education, SCAGO will be hosting its 2nd annual Sickle Cell Summit on November 4th and 5th, 2022.
This year’s Summit will bring together SCD stakeholders (in Canada and globally) from various sectors, including clinicians, scientists, patients, and their families, health policymakers, government officials, and advocacy groups to discuss challenges and successes in ensuring equitable care and treatment in SCD similar to other diseases.
The summit is an opportunity for patients, caregivers, healthcare providers, and industry stakeholders to convene, discuss and chart the way forward on our journey to find a sustainable, effective treatment for Sickle Cell Disease.
- Kim, E., Graves, E., Tunji-Ajayi, L. & Pendergrast, J. (2018). How Many Sickle Cell Disease Patients Are There in Ontario? Results of a Query of Health Services Administrative Databases. Retrieved from: https://sicklecellanemia.ca/
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