NICE rejects Ocrelizumab for PPMS in England and Wales

Primary progressive MS
1

This probably isn’t new news but this is what I read today…

…”they consider that the benefits gained from ocrelizumab treatment do not represent value for money, when compared to the cost of routine NHS treatment currently provided for PPMS.”

There is no NHS treatment currently provided for PPMS so far as I’m aware.

2

I don’t think this is new news. NICE only gave a provisional rejection and people were given the chance to comment. Final decision is, I think, due September.

3

I’m learning to steer clear of mentioning any pharma. There’s so many ailments, with no cure. I’ve chosen the holistic approach. Even that gets others view points. Damned if you do, damned if you don’t. Best to just get on with life as we know it & live better. Take care out there. Terry

4

Hi Flowerpot,

I have just been reading about it in the MS Trust Newsletter (this months), kind of feels like we’ve been written off and left to our own devices and I might of known it would come down to money.

Twinkle Toes x

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5

There’s that ‘Damned if we do Damned if we don’t’ again Terry :-/

Twinkle Toes x

6

I’ve just had a look on the NICE website and it says that they hope to publish the report on ocrelizumab for PPMS on 31st October.

All we can do is wait!

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7

Yes, that’s where I saw it and that’s exactly how I feel.

8

Hi Everyone, hope you all not too bad today,

So, the situation is that because there are no treatments for PPMS then they cost the NHS nothing, so absolutely any treatment that comes along will be rejected for PPMS unless it is free.

And Nice get paid to make these decisions do they?

It’s a joke, just not a very funny one.

Dave.

9

Well i am so confused. I saw my MS nurse today she is going to put me in for a six month referral with my neuro as she feels i would be a good candidate for the new meds for PPMS ocrevus. Now i read on here its not been passed by NICE. So does she not know that then? She seemed quite excited about it.

10

Like Moirah has said, there’s still time. I’m not holding my breath but we’ll have to see.

Sonia x

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11

Could they be trialling it?

Best of luck

Jan x

12

The Barts Blog have covered this subject a fair bit, including this one on managing expectations.

http://multiple-sclerosis-research.blogspot.com/2017/09/clinicspeak-managing-ppmsers.html

13

I saw a neuro on 13th of Aug, who told me i have PPMS and not RRMS, dont know if this is good news or bad, but he did tell me that Ocrevus would be available in the new year and i would be a candidate for it, i am currantly taking Aubagio which he tells me is doing nothing at all for my MS!!, IS Mis-diagnosis a common thing? and does HSCT have any results for PPMS

14

The facebook group is probably the best place to ask about HSCT.

15

Hi Everybody, hope you are all not too bad today,

So now that NICE have rejected Ocrevus for PPMS on the grounds that it is not cost effective does that mean they will approve Rituximab which is virtually identical to Ocrevus?

Rituximab/Rituxan is a fraction of the cost of Ocrevus and used for PPMS abroad.

Here is the link…

Dave.