Stephanie Steele | Director, Payor Relations & Policy
Immune Deficiency Foundation

Pre-Conference Day - World Orphan Drug Congress USA 2026 @ 14:00

Policies for Health Insurance Coverage for Rare Disease and Orphan Drugs

This workshop underscores the importance of advocacy in ensuring patient access to rare disease therapies across the entire product life cycle—from early drug discovery through commercialization. The discussion will begin with advocacy efforts that incentivize investment in rare disease research, particularly when unmet needs persist. As therapies advance into clinical development, we will examine strategies for incorporating patient perspectives into trial design and evaluation. We will also address payer‑driven barriers that restrict access to treatment once a therapy is approved for commercial use. Through real‑world examples, participants will gain insight into why sustained advocacy for treatment accessibility is essential to achieving broad access to high‑quality, life‑saving therapies for rare disease communities.  

Session Objectives  

• Explore the stages of product development where accessibility advocacy has the greatest impact.  
• Understand the importance of incorporating patient voices and preferences into regulatory and payer policies to ensure treatment accessibility.  
• Learn and discuss strategies for effective regulatory and payer advocacy on accessibility issues 

Stephanie Steele, Director, Payor Relations & Policy, Immune Deficiency Foundation

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Stephanie Steele / Policies for Health Insurance Coverage for Rare Disease and Orphan Drugs

Stephanie Steele, Director, Payor Relations & Policy,
Immune Deficiency Foundation

Having had a child with primary immunodeficiency (PI), I invested in the medical profession and trained to become a medical assistant at the Ohio Institute of Health Careers. My focus has always been on helping patients and guiding them to needed resources. I spent a decade in the PI consumer...

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Eric Feigen, Regulatory Affairs Manager, Immune Deficiency Foundation