Wednesday, July 26, 2017

ICER seeks comment on Value Framework Changes for Ultra-Rare Condition Treatments

The Institute for Clinical and Economic Review (ICER) has proposed adaptations to its value framework for very rare conditions. ICER is a leader in evidence-based analysis of the effectiveness of drugs and other medical treatments. ICER’s analyses, including benchmark value-based prices for new drugs, are used by a growing list of payers in developing fair prices. To address the different economics of value assessments for very rare conditions, ICER published a white paper on the research and ethics of the issue and convened an all-stakeholder meeting in May. ICER is now soliciting feedback from stakeholders on their proposal. Proposed adaptations include a broader range of cost-effectiveness thresholds, the context of difficulty in research on very rare conditions, a broader definition of other advantages such as improvements in school, family and community, and benefits to systems for screening and care of people with rare conditions. Send comments to by Monday, September 25th at 5pm ET for consideration.