Speaker: Marsha Treadwell

Sickle cell disease (SCD) is the most common inherited blood disorder in the world with over 300,000 affected births annually, primarily in low- and middle-income countries in sub-Saharan Africa and the Caribbean, and in India.  SCD is characterized by serious but preventable acute and chronic complications, including unique pain syndromes, as well as by stigmatization and/or structural racism. Both quantity and quality of life, psychological well-being, educational attainment, and employment are negatively impacted. SCD remains a neglected disease regarding access to comprehensive care, and to disease modifying and curative therapies. In this presentation, I will describe the complexities of SCD healthcare in a global context and I will focus on barriers to pain care including: healthcare providers’ biases and their failure to adhere to available guidelines; health related stigma; challenges with the transition from pediatric to adult care, particularly the emergence of chronic pain syndromes with age; and lack of access to interdisciplinary pain teams. I will describe strategies to establish partnerships to address these barriers - with individuals with SCD and their families, emergency department providers and community-based organizations. I will also discuss the importance of supporting the successful transition from pediatric to adult care for addressing barriers to pain care, as well as the utilization of anti-racism frameworks to improve SCD clinical care.

Learning Objectives:
1. Provide an overview of sickle cell disease and its most common complication, pain
2. Recognize barriers to optimal sickle cell disease pain care within a global context
3. Discuss strategies for achieving equity in pain care for youth with sickle cell disease