Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he has taken to increase patient access to new and innovative treatments for Myasthenia Gravis.
The Government is committed to improving the lives of those living with rare diseases, such as myasthenia gravis. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community: these include improving access to specialist care, treatments, and drugs. We remain committed to delivering under the Framework and published the annual England action plan in February 2025.
In the 2023 England Rare Disease Action Plan, action 25 was introduced to review the effectiveness of Innovative Medicines Fund (IMF), Early Access to Medicines Scheme (EAMS) and Innovative Licensing and Access Pathway (ILAP) in improving access to treatments for people living with rare diseases.
NHS England, the National Institute for Health and Care Excellence and the Medicines and Healthcare products Regulatory Agency will meet annually to continue to discuss progress and the role of EAMS, ILAP and IMF in supporting access to treatments for people living with rare diseases. These meetings will include representatives from patient advocacy groups, industry and clinical researchers. Further progress on action 25 has been reported in the 2025 action plan, which is available at the following link:
https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2025