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 publiccomments@icer-review.org by Monday, September 25th at 5pm ET for consideration.