Building a Human-Centered Narrative for Sickle Cell Disease: A Collaboration Between Positive Exposure and the SCD Community

Background: Sickle cell disease (SCD) is a highly stigmatized genetic disease that is often misunderstood by healthcare providers, the general public, and policymakers. Many of these misconceptions center on pain management and disease burden and create disparities in care and research funding. Positive Exposure is a nonprofit organization founded by photographer Rick Guidotti that leverages narrative-based advocacy and visual storytelling to challenge stereotypes and highlight the resilience, individuality, and humanity of individuals with genetic conditions. For example, its work with albinism, Down syndrome, Marfan syndrome, and others has helped shift global narratives from medicalized portrayals to empowering, positive representations, influencing policies and media coverage. Our objective is to describe the phased expansion of the Positive Exposure model. Through a strategic partnership of Positive Exposure with community-based organizations (CBOs), healthcare institutions, and medical schools, we seek to shift public and provider perceptions of SCD, thus increasing SCD visibility, reducing bias, and improving provider-patient communication.

Methods: This initiative follows a pilot-to-scale implementation model. The approach prioritizes: 1) Community engagement 2) Integration into healthcare and medical education, 3) Scalability and sustainability.

Results: The initiative has expanded in phases, demonstrating a successful model of growth and adaptation:
1. Local Pilot: A collaboration with an initial CBO resulted in an award-winning video and Faces Refining the Art of Medical Education (FRAME) stories. These stories showed "a broader, more humanized understanding of medical conditions and critical topics" affecting individuals with SCD.
2. Healthcare Integration: The project expanded to include the NYC public hospital system and a second local CBO, embedding storytelling into patient advocacy and provider training.
3. Regional Scale-Up: The initiative is now being implemented within the HRSA's Northeast Region Sickle Cell Treatment Demonstration Program's SCD CBO Collaborative, supporting many CBOs, hospital systems, and medical schools.
4. Structured Educational Tools: We are developing Prepackaged storyboards and interactive materials for hospitals and communities

Conclusions: This initiative represents a scalable, community-led approach to addressing stigma and inequities in SCD care through partnership with Positive Exposure. Using co-created narratives and multimedia advocacy tools, the project has successfully expanded from a local pilot to a regional collaborative, with potential national implementation. Future efforts will focus on measuring impact, refining dissemination strategies, and embedding storytelling into health professions education to drive meaningful systemic change.