Siponimod, a tablet taken once daily to treat secondary progressive MS (SPMS), is currently under investigation by NICE to assess whether it should be available via an NHS prescription in England and Wales.

Scotland and Northern Ireland will carry out separate appraisals.

National charity the MS Trust plans to make a compelling case to NICE in favour of the drug being available on the NHS – and needs input from people with MS and those who work with MS patients.

In a statement, the charity says: “The MS Trust will be explaining to NICE why we think siponimod should be made available on the NHS.

“To help us make a strong case, we want to hear your experiences of living with SPMS, your views on current NHS care for SPMS and your thoughts on siponimod.

“We’d like to hear from you if you live in the UK and you have secondary progressive MS; you have a different type of MS, but would like to add your views; you are a partner / friend / relative / carer of someone with SPMS; you are a health professional providing care for people with SPMS.”

David Martin, CEO of the charity, says: “There are thousands of people living with secondary progressive MS. Siponimod is the first drug so far to be shown to slow down the progression of secondary progressive MS and so it is significant to the MS community. We hope as many people as possible who are eligible for the drug will have access to it in the near future.”

Siponimod acts on certain types of white blood cells (lymphocytes) which are involved in the autoimmune attack on myelin seen in MS.

It binds to special locations (or receptors) on the surface of the lymphocytes, called sphingosine-1-phosphate receptors (S1P-R).

This causes a larger proportion of lymphocytes to be retained in the lymph glands. The number of activated lymphocytes reaching the brain is decreased, resulting in reduced immune attack on nerve cells in the brain and spinal cord.

In one study, siponimod was found to reduce risk of disability progression in SPMS by 21 per cent compared to placebo.

In the US, the Food and Drug Administration (FDA) has approved siponimod for relapsing forms of MS, which includes clinically isolated syndrome, relapsing remitting MS and active secondary progressive MS.

An application for a licence to market siponimod as a treatment for SPMShas been submitted to the European Medicines Agency. A decision on this application is expected in late 2019.

The MS Trust wants to hear from people affected by MS – or healthcare professionals working with MS patients – by 17 September. Find out more here.