Written question asked by Peter Dowd (Labour) on Friday, 28 August 2026, in the House of Commons. It was due for an answer on Wednesday, 2 September 2026. It was answered by James Frith (Labour) on Tuesday, 15 September 2026 on behalf of the Department of Health and Social Care.

Drugs: Rare Diseases

Question: To ask the Secretary of State for Health and Social Care, further to the UK-US pharmaceutical agreement, how the Government’s proposed pilot on productivity benefits in medicines assessment will account for the wider value of treatments for rare conditions, including impacts on patients, families and unpaid carers.

Answer: Implementation work is currently underway to develop further details for each individual pilot. Detail regarding which treatments, including for rare conditions, are included, how each pilot will function, and how stakeholders will be involved are yet to be determined. Groups including the Charity Medicines Access Coalition and the Association of Medical Research Charities have been involved in the development of pilot concepts and will continue to be consulted. These groups collectively represent hundreds of organisations, including those representing people affected by rare conditions.

Secondary information