James Chambers | Professor
Tufts Medical Center
James D Chambers, PhD, is an investigator at the Center for the Evaluation of Value and Risk in Health at Tufts Medical Center and a Professor of Medicine at Tufts University School of Medicine. He developed the SPEC Database, a novel resource of specialty drug coverage policies issued by major U.S. commercial health plans, which serves as the foundation for much of his research. His work uses mixed methods to examine health plan decision-making, highlighting variation in patients’ access to specialty therapies across commercial plans and in the use of utilization management tools. He has also assessed the factors influencing coverage decisions, finding that a drug’s cost-effectiveness is associated with the restrictiveness of plan policies. He also developed a database of the added health gains and costs of new drugs compared to existing treatments, which he has used to evaluate the relative value of specialty vs non-specialty drugs, drugs for rare disease vs drugs for more prevalent conditions, and small molecule vs. biologics. James earned his MPharm from Queen’s University Belfast and worked as a pharmacist in the UK and Ireland before completing an MSc at the University of York and a PhD in Health Economics at Brunel University.
Appearances:
Day 1 - World Orphan Drug Congress USA 2026 @ 11:30
Panel: Coverage That Keeps Up With Innovation: Access to Rare Disease Therapies
Despite major scientific advances and a growing pipeline addressing the high unmet need in rare disease therapeutic options, people living with rare diseases in the United States continue to face significant barriers to timely and appropriate access to therapeutic innovation. Commercial health insurers play an important role through coverage policies that increasingly rely on utilization management tools such as step therapy and patient eligibility restrictions. While historically payers have not limited access to rare disease therapies, emerging evidence suggests they are expanding the use and complexity of restrictions, with meaningful implications for patients and clinicians.
Objectives-Understand recent trends in U.S. commercial insurer coverage of rare disease therapies, including growth in utilization management as a growing barrier to access.-Learn about the patient experience navigating a rare disease condition, including the real-world impact of health plan coverage decisions on care and quality of life.-Identify opportunities to strengthen collaboration among payers, clinicians, manufacturers, patient communities, and policymakers to protect and expand timely access to orphan drugs.
Day 2 - World Orphan Drug Congress USA 2026 @ 11:40
Coverage of Rare Disease Therapies in U.S. Commercial Insurance: Patterns and Trends
Health insurance plans in the U.S. independently determine coverage for rare disease therapies, resulting in substantial variation in patient access. Differences such as step therapy and subgroup restrictions can delay or deny needed treatment. This presentation will examine how U.S. commercial health plans cover rare versus non-rare therapies, assess variation in access requirements across payers, and evaluate longitudinal trends in orphan drug coverage.
Objectives:
- Describe U.S. commercial health plans coverage for orphan therapies and how this differs from coverage of non-rare therapies.
- Identify common utilization management requirements, such as step therapy and patient subgroup restrictions, and explore their impact on patient access to orphan treatments.
- Assess variation in coverage criteria across major U.S. commercial payers and understand the drivers of this variation.
- Evaluate longitudinal trends in orphan drug coverage and discuss implications for patient access, clinical practice, and policy.
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