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.