Kaiser Permanente Center for Total Health
700 2nd St NE, Washington, DC 20002
ICER is hosting a multi-stakeholder policy summit to discuss methods for assessing the value of new drugs for rare conditions. The summit will include discussion of how methods can be applied to recommend fair prices that reflect the value of orphan drugs to patients and the health system, to allow for broader insurance coverage for innovative new treatments.
Registration for the in-person meeting is at capacity, but a webcast will be available (registration link below).
Process for Public Comment
A Briefing Paper posted on May 10, 2017 (white paper below) will inform the discussion during the pricing summit. Following the meeting, ICER will produce a Final Meeting Report and Proposed Framework Changes document outlining modifications to its assessment process when applied to treatments for rare conditions. This document will be open for public comment for 60 days. Dates reflected below are tentative and subject to change.
In addition to the Briefing Paper, the following academic papers may serve as useful pre-reading for the Summit:
Tordrup D TV, Kanavos P. Orphan drug considerations in Health Technology Assessment in eight European countries. Rare Diseases and Orphan Drugs. 2014;1(3):83-95.
Hughes DA, Tunnage B, Yeo ST. Drugs for exceptionally rare diseases: do they deserve special status for funding? QJM : Monthly Journal of the Association of Physicians. 2005;98(11):829-836.
The California Endowment Los Angeles Conference Center
1000 N. Alameda St.
Los Angeles, CA, 90012
Grappone Conference Center
70 Constitution Avenue
Concord, NH 03301
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