Employer Challenges & Opportunities

A working group of employers, focused on better understanding and addressing the challenges and opportunities for members with hemophilia, resulted in the following learnings. Employers shared they:

🌡️ Cost & Affordability

• Underestimate total cost of care, especially drug spend.
• Have limited understanding of cost drivers, including how poorly managed factor replacement therapy increases avoidable spend.
• Lack tools, data, and strategy support to manage hemophilia costs effectively.
• Rely heavily on vendor partners without visibility into how their practices may inflate costs.
• Do not receive detailed, actionable claims reporting from PBMs or carriers.
• See wide cost variation across members and struggle to predict or budget for it.
• Are concerned about financial stress on families, especially under high‑deductible plans.

🚧 Access Challenges

• Lack awareness of Centers of Excellence, such as Hemophilia Treatment Centers, and how they improve outcomes and reduce unnecessary spend.
• Are unclear on how to ensure appropriate monitoring and management of factor therapies, leading to inconsistent care pathways.
• Are concerned about time demands on employees caring for dependents with hemophilia, which can affect productivity and retention.

🔍 Awareness, Visibility & Treatment Landscape

• Have limited understanding of hemophilia overall, including disease complexity and modern treatment approaches.
• Do not know where to turn for guidance on building comprehensive hemophilia management strategies.
• Lack visibility into real‑world utilization and outcomes, making it difficult to evaluate whether current vendor practices are effective.
• Are underinformed about best‑in‑class treatment options, care models, and the role of specialized centers.