Department of Health and Social Care written question – answered at on 12 March 2025.
Luke Evans
Shadow Parliamentary Under Secretary (Health and Social Care)
To ask the Secretary of State for Health and Social Care, what discussions he has had with (a) NHS England, (b) the Medicines and Healthcare products Regulatory Agency and (c) the National Institute for Health and Care Excellence on the availability of (i) treatment options and (ii) care pathways for patients with myasthenia gravis.
Ashley Dalton
The Parliamentary Under-Secretary for Health and Social Care
Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as myasthenia gravis. My Rt Hon. Friend, the Secretary of State for Health and Social Care has not specifically discussed myasthenia gravis with NHS England, the Medicines and Healthcare products Regulatory Agency (MHRA), or the National Institute for Health and Care Excellence (NICE).
On 7 March 2024, the MHRA approved the medicine rozanolixizumab (Rystiggo) to treat adults with generalised myasthenia gravis, an autoimmune disease that causes muscle weakness, which can affect multiple muscle groups throughout the body. The MHRA is in active discussion with companies to bring more medications to patients.
The NICE is currently developing technology appraisal guidance on the following treatments for generalised myasthenia gravis: rozanolixizumab and zilucoplan for treating antibody positive generalised myasthenia gravis; and efgartigimod for treating generalised myasthenia gravis. Further information on rozanolixizumab, zilucoplan, and efgartigimod is available, respectively, at the following three links:
https://www.nice.org.uk/guidance/indevelopment/gid-ta10994
https://www.nice.org.uk/guidance/indevelopment/gid-ta11096
https://www.nice.org.uk/guidance/indevelopment/gid-ta10986
In addition, nipocalimab and inebilizumab, for treating generalised myasthenia gravis, have been selected for appraisal by the NICE, with further information on both available, respectively, at the following two links:
https://www.nice.org.uk/guidance/awaiting-development/gid-ta11492
https://www.nice.org.uk/guidance/awaiting-development/gid-ta11667
Finally, the NHS.UK website page on myasthenia gravis provides an overview of the care pathway, with further information available at the following link:
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