NICE assessing rare disease meds on outdated evidence, says BIA research

The UK’s BioIndustry Association (BIA) has published research suggesting that the country’s medicines evaluation body is basing its methods and processes for evaluating drugs for rare diseases on outdated evidence.

This study, called Rare insights: examining the social values of treating rare diseases, has been supported by the BIA’s Rare Disease Industry Group (RDIG). It presents the findings of primary research into public opinion on how treatments for rare diseases should be evaluated and funded within the National Health Service (NHS).

During a recent large-scale review of its methods and processes, the National Institute for Health and Care Excellence (NICE) concluded that there was no robust evidence that society values more highly health benefits in rare diseases.