Patient group wants more NICE transparency on rare diseases

Rare disease patient group Genetic Alliance UK said the U.K.'s Department of Health and National Institute for Health and Care Excellence should be more transparent about the process for determining which ultra-Orphan drugs will be evaluated under NICE's new Highly Specialized Technologies (HST) process. The group said patients also should have a greater role in evidence submission and evaluation of products. The recommendations were included in the Soliris eculizumab from Alexion Pharmaceuticals Inc. (NASDAQ:ALXN) for atypical hemolytic uremic syndrome (aHUS) and asked the company for details of its development costs (see BioCentury, March 17). ...