Today the National Institute for Health and Care Excellence (NICE) provisionally decided not to recommend siponimod (Mayzent) for people with secondary progressive MS on the NHS. This decision applies in England and Wales.
Siponimod (also known as Mayzent) is a daily tablet. It’s the first oral treatment for secondary progressive MS. The European Medicines Agency (EMA) licensed it for people with active secondary progressive MS in January. But it needs to be recommended by NICE before it can be prescribed on the NHS.
This provisional decision only applies to England and Wales right now. However, any delay in making siponimod available could have a knock-on effect across the UK.
We've got an opportunity to feed back to NICE about what this decision means for people with MS, but we need your help. If you have secondary progressive MS and still have relapses or activity on your MRI scans, we'd love to hear from you.
Siponimod (Mayzent) could change lives
There’s only one other available treatment for active secondary progressive MS in the UK, which must be injected. Siponimod represents a more effective, more convenient option which could help thousands of people take control of their MS.
It's been found to reduce risk of disability progression by 37% compared with a placebo (dummy drug).
Lack of treatments for secondary progressive MS
Steve Clynes, 64, lives in Leeds and has secondary progressive MS. Like thousands of others with the condition, his mobility is getting increasingly worse over time.
Steve said: “The hardest thing for me to deal with has been the rate of change in recent years. I just think where will I end up, what’s around the corner? I was able to drive up until last year but had to get rid of my car which was awful, as it made me so much more dependent on my wife. And I’ve now got to a point where I need a walking stick just to get around the house. You realise it’s getting more and more, worse and worse.
If there was anything I could do to stop my disability progressing I’d try it, and as far as I can see this drug is the only hope we have.
He adds: “The lack of treatments for people like me is a crying shame, and to deny us something that could finally help would be a very callous thing to do. They need to realise that there are people’s lives at stake, and this could be life-changing.”
NICE opportunity to do what's right
Jonathan Blades, our Head of Campaigns and External Relations said: “Siponimod is the first new treatment for secondary progressive MS in over a decade, and the only oral option. There’s just one alternative and it isn’t suitable for everyone. For those people, to be denied a way to manage their condition will be devastating.
"This decision could have a profoundly negative impact on thousands of lives. But NICE, together with the drug manufacturers and NHSE, have an opportunity to turn that around. We’re urging them to look again at the evidence and the reality of life with a gradually worsening disability, and do what’s right.”
Speak up for siponimod now
Do you have active secondary progressive MS? Please tell us why siponimod would make a difference to your life. We’d like to hear from people who
- have active secondary progressive MS (active means you experience relapses, or have evidence of inflammatory activity on MRI scans)
- are getting treatment right now for secondary progressive MS, but would prefer a tablet treatment over an injection
We’ll use your experiences to tell NICE why it’s so important siponimod is made available.