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1 year ago

On grounds of cost apparently. I guess that’s not to say that it won’t be approved for PPMS

However, time for protest me thinks. And how do they plan to now consult the public? To turn it down on grounds of efficacy is one thing but cost…….?

Very disappointing…..

1 year ago

It is just a preliminary assessment. But, it is disappointing.

1 year ago

Its a major disappointment …. and I think for the PPMS family, NICE should have made a statement with this first drug, even if the benefits of the drug are moderate at best, at this juncture moderate versus sweet f**k all in terms of treatment…. seems like a lottery win….

The alternative is they allow HSCT for people with PPMS instead of having anal criteria, again the PPMS folk, being f**ked over…

There is no much reliance on MRIs to determine where you sit on in the treatment food chain….

This is very frustrating as we know, people can have an MRI that has a trillion lesions and run a marathon vs someone with no lesions and major clinical symptoms…. grey matter is not covered adequately on MRIs….

Wish I knew a way to push this issue at this highest levels, its very frustrating.

1 year ago

@majesty..Professor Giovannoni has just tweeted that he suspects that if it is not approved for RRMS then there will be no DMTs for people with PPMS .

1 year ago

In fact he has said he suspects it will make it “impossible “for people with PPMS to be treated with DMTs

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