Graphic: megaphone with text saying Raise your voice for people with MS # Speak up for MS

21,000 spoke up for ocrelizumab for progressive MS

Earlier this year the National Institute for Health and Care Excellence (NICE) rejected the first disease modifying treatment (DMT) for progressive MS because they say it costs too much.

DMTs are not a cure for MS, but they can slow down damage that builds up over time. There are several DMTs for relapsing MS. But ocrelizumab (drug name Ocrevus) is the first and only one licensed to treat primary progressive MS.

NICE approved ocrelizumab for relapsing MS, but rejected it for early primary progressive MS and we don't think that's fair.

Speak up for treatment for progressive MS in Westminster

In September this year, over 21,000 of us spoke up together to call for NICE, NHS England and the drug manufacturer Roche to find a deal together.

Building on that momentum, we organised an event in the Houses of Parliament in November which was well attended by MPs, drug companies and most importantly, people with MS.

What's the research?

In medical trials, people with primary progressive MS who took ocrelizumab had 25% less risk of their disability getting worse.

Read more about ocrelizumab research

So why did NICE say no?

NICE say the drug costs too much for the benefits it can provide. The drug company Roche offered a lower price for its use for progressive MS. But NICE say unless they get special approval from NHS England they can't buy it at two different prices for the different types of MS.

21,000 spoke up, now MPs must help

We’re calling for the manufacturer Roche, NICE and NHS England to put patients first and agree a deal to make ocrelizumab available at a price the NHS can afford.

Right now, this decision affects England and Wales. But getting the right deal is crucial to make sure ocrelizumab can go through approval processes in the other nations in the UK without unnecessary delays. We'll keep speaking up with you and our whole MS community until everyone with MS can get the right treatment at the right time.

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Photo: young girl with MS sits in hospital chair smiling at male nurse