Lauren Kopsick | Founder & Executive Director
The Healthcare Navigation Project
Lauren Kopsick is a healthcare navigation educator and systems strategist working at the intersection of healthcare, education, and workforce development. She is the Founder and Executive Director of The Healthcare Navigation Project, where she designs active-learning programs that strengthen health literacy, self-advocacy, and real-world healthcare navigation across community and institutional settings. Her work focuses on translating complex healthcare systems into practical, teachable skills that improve access, communication, and continuity of care.
Appearances:
Pre-Conference Day - World Orphan Drug Congress USA 2026 @ 15:00
From Approval to Access: Why Orphan Drug Success Depends on Healthcare Navigation, Not Just Innovation
Orphan drugs face a critical but under-addressed challenge: approval does not guarantee access. Even when therapies exist, patients frequently encounter system-level barriers—prior authorization delays, pharmacy benefit management denials, fragmented care coordination, and communication breakdowns—that result in treatment interruptions, non-adherence, or complete loss to follow-up.
Drawing on real-world implementation across school-based health centers and a twelve-week re-entry mental health program operated in partnership with the New York State Office of Mental Health, this session explores how structured healthcare navigation and patient communication frameworks can close the gap between drug approval and real-world utilization.
Attendees will examine how navigation-based interventions improve patient engagement, persistence, and continuity of care—and how these approaches can be integrated into orphan drug access strategies to protect both patient outcomes and long-term therapeutic value.
Objectives:
- Identify common system-level barriers that prevent orphan drug patients from maintaining uninterrupted access post-approval, including payer, PBM, and care coordination failures.
- Explain how structured healthcare navigation and communication frameworks improve treatment continuity, adherence, and patient engagement in complex care pathways.
- Apply navigation-informed strategies to patient support programs, access initiatives, or post-launch planning to reduce attrition and improve real-world outcomes.
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