Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent steps he has taken to assess the effect of NICE’s Highly Specialised Technologies process on patients in the UK with rare diseases.
To date, the National Institute for Health and Care Excellence (NICE) has recommended all eight medicines that it has evaluated through its highly specialised technologies (HST) programme for some or all of the eligible patient population, in most cases subject to managed access agreements that specify clinical criteria and data collection requirements. National Health Service organisations are legally required to fund medicines recommended in NICE’s HST guidance, and patients with the rare diseases concerned are now benefitting from access to the medicines in line with NICE’s recommendations.