BIA calls on NICE to update evidence on rare disease medicines 20 Apr 2023

New research has found that the public believes a new approach should be adopted for making funding decisions about treatments for rare diseases. The report ‘Rare insights: examining the social values of treating rare diseases’, was commissioned by the UK BioIndustry Association’s (BIA) Rare Disease Industry Group (RDIG). 

The research was commissioned following a review that the National Institute for Health and Care Excellence (NICE) conducted into its own methods and processes that concluded that there was no robust evidence that society valued health benefits in rare diseases more highly.  

The BIA report comprised focus groups and an online survey of 1,000 people. It found a need for fresh research to determine the social values that should underpin the methods and processes used by NICE to make decisions about the NHS funding of treatments for rare diseases.