We’ve delivered a petition calling for urgent action on ocrelizumab for primary progressive MS
Today we’ve delivered that petition to the National Institute for Health and Care Excellence (NICE), NHS England, and drug manufacturer Roche, urging them to take action.
No treatments available for people with primary progressive MS
Ocrelizumab is the first licensed treatment for primary progressive MS. But in September, NICE announced it would not be recommended for use on the NHS.
Since then, roughly 250 people in the UK have been diagnosed with primary progressive MS with no treatment available to them. And that number’s going up.
Ocrelizumab can be paid for privately, but it costs £19,000 per year. We know this is simply unaffordable for most people living with MS.
“We're being denied something that could help”
Holly was diagnosed with primary progressive MS in March 2018. Since NICE rejected ocrelizumab, her condition has deteriorated rapidly.
She says: “When I was first diagnosed I was just having problems with my right leg but now it’s my left as well, which is really affecting my ability to walk. My bladder problems are getting worse too, and I’m having more and more accidents.
“It’s so frustrating to know there’s a treatment that could slow all this down and perhaps change things for me, but I can’t have it. The toughest thing is not knowing how to plan for the future. I’m still young and I want a life and kids, but I have no idea how bad things will get.
“The fact people like me are being denied something that could help us stay as we are – even if just for a few years – is devastating.”
Ocrelizumab must be made available to everyone who could benefit
Genevieve Edwards, our Director of External Affairs, said: “Living with primary progressive MS can be painful and exhausting, and there’s finally a treatment that could help.
With the potential to delay the need for a wheelchair by seven years, ocrelizumab offers people hope for a better future. But right now thousands of people are being denied that opportunity.
“NICE, NHS England and Roche could put this right, so it’s vital they reach a deal. This could be life-changing for thousands, and more than 21,000 agree – ocrelizumab must be made available to everyone who could benefit, at a price the NHS can afford.”