UK’s BIA finds government unwilling to set price cap for orphan disease treatment

The majority of Members of Parliament in the UK believe there should not be a maximum price per patient for treating people with very rare diseases, according to research commissioned by the trade body the BioIndustry Association (BIA).

The research is published in a report titled Very rare diseases, complex issues, which focuses on the new evaluation framework for ultra-orphan medicines in England at a critical time in the development of this framework. It also comes ahead of the full formal consultation on the methodology and processes behind such evaluations to be held later this year by the UK’s National Institute for Health and Care Excellence (NICE).

The BIA research has found that: