Backbench business: Debate on a Motion relating to the NICE appraisals of rare diseases
There will be a backbench business debate on a motion relating to the NICE appraisals of rare diseases held in the House of Commons chamber on Thursday 14th March 2019. The debate will be led by Liz Twist MP. This Pack contains background information, parliamentary and press material, and further reading suggestions which Members may find useful when preparing for this debate.
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.