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Written question asked by Baroness Pidgeon (Liberal Democrat) on Tuesday, 14 July 2026, in the House of Lords. It was due for an answer on Tuesday, 28 July 2026. It was answered by Baroness Merron (Labour) on Friday, 28 August 2026 on behalf of the Department of Health and Social Care.

Rare Diseases: Drugs

Question

To ask His Majesty's Government what plans the Department of Health and Social Care and NHS England have to meet rare disease patient groups to discuss indication-specific pricing for multi-indication medicines as part of its work in the forthcoming Commercial Framework consultation.

Answer

NHS England has not entered into any commercial agreements involving indication-specific pricing for kidney conditions, or for rare kidney conditions, between June 2021 and July 2026. However, during this period, NHS England has entered into three commercial agreements involving indication-specific pricing for kidney cancer indications, including renal cell carcinoma indications.

NHS England regularly engages with patient groups, including the Charity Medicines Access Coalition, Genetic Alliance UK, and the Neurological Alliance, whose members represent people living with a wide range of rare conditions. More recent engagement has included patient groups representing people with conditions such as spinal muscular atrophy, muscular dystrophy, and motor neurone disease, where National Institute for Health and Care Excellence technology appraisals have been undertaken or are ongoing.

As part of the upcoming consultation on updates to the NHS Commercial Framework for New Medicines, NHS England will seek views from a broad range of patient organisations, including those representing people with rare diseases.

Secondary information

Type
Written question
Reference
HL2100
Session
2026-27
Grouped for answer
Yes
Subjects
Contracts Drugs Rare diseases NHS England
Link
View this Written question on www.parliament.uk