Backbench business: Debate on a Motion relating to the NICE appraisals of rare diseases

A rare disease is generally considered as one affecting fewer than 5 people in 10,000. However, large numbers of people are affected by rare conditions. The UK Strategy for Rare Diseases (2013) estimated that in the UK alone, more than 3 million people will suffer from a rare disease at some point in their life. Due to the fact that relatively small numbers of people are affected by a particular rare disease, there are specific challenges in ensuring speedy diagnosis and access to appropriate services and treatments. The National Institute for Health and Care Excellence (NICE) provides evidence-based information for the NHS on the effectiveness and cost-effectiveness of healthcare interventions. It publishes technology appraisal guidance on treatments which must be funded by NHS commissioners in England, including a process for the assessment of treatments for rare conditions. These have a higher cost effectiveness threshold than standard technology appraisals.