SCD
Sickle Cell Disease (SCD) is the most common hereditary disease globally affecting over 30 million people. It is most prevalent in Sub-Saharan Africa, India, Arabian Peninsula, Caribbean, and North/South America. Globally, people living with SCD suffer disproportionately high premature deaths, repeated emergency room visits and hospitalizations due to acute complications, and significant multi-organ life limiting long-term complications. People living with SCD experience episodes of severe excruciating pain on an ongoing basis, impacting their daily living and overall quality of life. However, we do not yet know the real prevalence of SCD in Canada. In partnership with the Canadian Sickle Cell Disease (SCD) Association, Dr. Smita Pakhale launched the Canadian SCD Registry in 2022. The Bridge Engagement Centre, a community based research centre led by Dr. Pakhale also supports the historic Bill S 201, an act proposing a national framework on sickle cell disease, which got passed in the Senate and is currently in the House of Commons. Through systematic reviews, rigorous research, and advocacy efforts – we aim to develop awareness and reshape policies and practices to more effectively support and provide comprehensive care to those living with this disease.
RELEVANT PUBLICATIONS
A global overview of SCD: populations, policy limitations, and urgent need for comprehensive SCD clinical care, a systematic review
We aim to describe socio-demographics of SCD populations globally and highlight policy limitations and urgently needed changes to achieve equitable and just SCD care and research. An electronic database search of Ovid MEDLINE (“sickle cell disease and marginalized people” and “policy in sickle cell disease”) was conducted for the period 1947 to May 2022. Additional information was obtained through Google Scholar, gray literature, and back references of relevant articles. Study selection and quality assessment was conducted independently in duplicate. Data were extracted and analyzed from 137 full articles, reports, and gray literature. We propose 5 main actionable items: (1) establish and strengthen national and international screening programs; (2) implement prevention and education programs; (3) enhance collaboration between stakeholders; (4) increase funding for SCD-related research; and (5) promote new models for multidisciplinary and transition care. Globally, social, economic, geographical, and political factors affect access to comprehensive SCD management. Urgent policy changes are needed for equitable, inclusive, and just SCD care with lifespan approach, and research.