Brilliant news about Aubagio

Brilliant news that Aubagio has been licensed in Europe, now for it to confirmed cost effective by NICE so we can be prescribed it. I’m so happy :slight_smile:

Well, I hope your optimism proves justified, Rebecca.

The reason I’m so sceptical is that the benchmark for cost-effectiveness in the past has been doing nothing - which, of course, costs nothing. So I find it difficult to see how any treatment can ever be deemed cost-effective, when the target to beat is spending nothing. My fear is that only a complete cure will ever look “cost effective” compared to that. None of the existing firstline injectables have ever been deemed “cost effective” - they’re only available through a novel “risk sharing scheme” with the drugs companies. Of course, that’s not to say a similar scheme couldn’t be hatched-up for emerging drugs. But I think, on the traditional cost-effectiveness test, few, if any of the currently available therapies would make it.


Never heard of this medication before!

I’ll have to search the MS Society website to find out more

Thanks for the update, Rebecca !



I’ve now had time to read a little about Aubagio, and it simply looks like yet another RRMS treatment that may well help some, but offer no help to many!

(…I have SPMS, so no personal interest - just wanted to find out more about this medication !!)

It seems to have a totally mediocre success rate (…30-40%) at its intention of preventing further relapses and therefore damage through MS. Aren’t there already plenty of drugs that claim this kind of potential?

Sorry, but for the moment at least, I don’t share any excitement or expectation of Aubagio.

Hopefully, it’s an alternative for those people who were unable - for whatever reason - to at least try the existing treatments?


Tina - has the ‘risk sharing’ system not been scrapped a while back now? I might be wrong but i thought it had?

Rebecca - it will be good news if when licenced - the criteria is not too strict and we can get the drug.

I have been interested in the new drug (not available yet) which is BG12 but when i saw my neurologist in June he said even if it was licenced i would not get it because my ms is not bad enough and it would be too expensive for me.

I dont know if he was telling me the truth though or trying to fob me off again!

Im happy on the rebif but i am very open to change and the newer ‘up and coming’ oral drugs sound very effective and hopefully without too many side effects.

I am optamistic that there will be a good choice of drugs for rrms. Lets hope there is more for spms and ppms very soon.



Like Dom says it will only help those with RRMS. No good for the rest of us which is a shame.

All the DMDs seem to be about the same with regard to their effectiveness of reducing relapses (about 1/3rd). So the success rate of the new drug doesn’t seem to be any better than the ones available now which is a shame.

Mind you, this med can be taken orally rather than by injection which is a bonus.

Take care

Shazzie xx

Hi Teresa,

I’ve not heard of the risk-sharing scheme being scrapped. There was a lot of bad publicity about it a few years back - mostly fuelled by the media - but I don’t think that implies it has been scrapped. If it had, it would mean NICE was suddenly satisfied of the cost-effectiveness. I don’t think there’s been new evidence showing the firstline DMDs were more effective than previously thought at reducing relapses or long-term disability. So if there’s been no new evidence, what would make NICE think something is now cost-effective, that previously wasn’t?

I believe the scheme is still in force, and evidence still being collected. I’m not sure what the timescale is for completion of the analysis, but I’m sure it’s been “delayed” due to the earlier controversy about how initial data was assessed, and that it produced no useful results. Without getting bogged down into too much detail, the lack of proof that DMDs were “cost effective” wasn’t proof that they weren’t - it was more of a problem with the methods used to try to assess it, than a negative finding about the drugs themselves.



Hi, this drug wont be of use to me, but if it works and means no injections for some then that`s good. My hubby does a weekly injection for his rheumatoid arthritis. I cant watch him do it and would hate to have to do it to myself.

If this new drug offers hope for some, then I hope it is effective.


I’m with Tina on this one. Don’t get too excited about it. The likelihood is that NICE will spend a couple of years looking at the data in Europe before deciding that, if it does reduce relapses as much as the injectables, it is probably far too expensive and, like Gilenya, will only be offered if you have already tried other treatments and are still relapsing.

The risk-sharing scheme hasn’t been scrapped. If it had then we wouldn’t have to make 2 hour trips to our nearest prescribing hospital. Why do you think you still have to fit the criteria before you can get the drugs in the first place?

I think we are still a long way from these drugs being offered to every patient after their first episode of demylination even though there is some evidence that this can make a difference to the progression of the disease.

Sorry if this disappoints you but I’m a realist.

In the meantime I am still keeping my fingers crossed for the call from my nurse in the next couple of days to say that my test results are sorted and that I can start on Gilenya. There’s no point in waiting for Aubagio to be licensed and approved by NICE (even though the possible side effects look a bit less scary) as that could be years away and I don’t want to keep relapsing while I wait.

Tracey x

Oops, I meant to say that NICE will look to see if it is more effective at reducing relapses than the injectables. Stupid brain ran away with itself there …

It seemed to me that it might now join the first line interferon beta and Copaxone group, with the advantage over those,that it is a tablet and not an injectable.

I know nothing of the “cost effectiveness” criteria and tend to cynicism but Gilenya is made available through NICE, and relevant fo me, SMC (Scottish Medicines Consortium).

A sensible cost effectiveness criteria seems to me that the cost of the drugs is compared to the cost of lost workforce and cost of symptom relief but I think that isn’t the criteria used.

More interesting to me is that Alemtuzumab (Campath now Lemtrada) has been recomended to be licensed as a first line drug for RRMS by the EMA (in Europe [and that includes us] equivalent to the US FDA). Over two years it was twice as twice effective as REBIF and the Barts and the London neurologist team leader says that generally it is one treatment (of two infusions) that stops RRMS and if it doesn’t, repeat the treatment. So it is likely to stop people getting to SPMS. Too late for me/us. While I’m still in the still RRMS stage SPMS is looming.

Lets hope the SMART trial brings out help for SPMS.

Oops, I meant to say that NICE will look to see if it is more effective at reducing relapses than the injectables. Stupid brain ran away with itself there …

Oops, I meant to say that NICE will see if the new tablet is more effective at reducing relapses than the injectables. My brain ran away with itself a bit …

And now I have computer issues lol!

Gilenya is available but only if you have rapidly evolving RRMS or if you are still relapsing whilst on one of the standard first line treatments ie the beta interferons or Copaxone.

Here’s a quote about the prospect of Tysabri being offered as a first line treatment:-

“… if Tysabri as a first line treatment is approved by the EMA, then people will be able to consider taking Tysabri earlier than is currently allowed – regardless of whether they’ve failed on current first line therapies.”

Call me a cynic, but I suspect that NICE will still have the final word when it comes to cost effectiveness. If it’s much more expensive than the injectables, the vast majority of patients will not be offered it as a first line treatment.

Tracey x

I like the look of BG-12. It has been licensed but is not yet available. Apparently will be available by March next year.

I am on nothing at the moment and feel good. Waiting to go on Copaxone at the beginning of next month. I have looked at clinical trials, especially Altemzumab but the side-effects look pretty horrible.

Adrian x