Forum

Restricting DMD choice

Everyday living
#1

I’ve just seen this: https://www.mssociety.org.uk/ms-news/2017/12/nice-propose-restricting-future-ms-treatment-options

NICE are proposing taking the majority of the old style injectables off the table for new patients on the grounds that they are not cost effective. So it’s OK if you’re already on one, but the newly diagnosed would not have the options of Avonex, Plegridy, Betaferon, Rebif Or Copaxone available to them. The only one considered to be ‘cost effective’ is Extavia.

It’s bizarre, because many newly diagnosed are not being given a choice, but are just put on (typically) Copaxone. And we are constantly telling people they should have a choice, and that other DMDs are more effective, eg Tecfidera.

And yet Copaxone to me has one of the least, average side effects of any of the DMDs. I know we are all different, and other people have had side effects from Copaxone, but if I were to have had low lymphocytes from Tecfidera, was JCV+ (and in a dangerous risk group), I’d want to have the options of the old style drugs available.

We know that they are generally safe and well tolerated. OK, they only have an average relapse reduction rate of about 35%, but that’s better than Aubagio. And they are cheaper than Tysabri aren’t they? In fact they’re cheaper than Tecfidera, Aubagio and Tysabri.

What does everyone else think?

Sue

#2

I am really upset about this. I will have to check but I am certain it also affects people who want to switch drugs, leaving a very small pool of drugs to choose from. I am about to start Aubagio but if that doesn’t work out I am up the creek because I don’t qualify for the stronger more effective drugs.

My feelings about all the people who will be diagnosed after this is decided, which it will be, not being able to choose drugs like Avonex which worked really well for me for the first few years.

I feel like we are being attacked what with the welfare support cruelty and now the drugs.

Sam

#3

it will be hard for the ms nurses who are the people most of us get out drugs from.

if it’s just a cost cutting exercise, pppth.

copaxone served me well for the first 6 years of my ms.

we should stage a riot!

#4

This was pretty much the first thing my wife told me when i got home from work.She has not been seen by an Ms specialist or nurse yet.Got an appointment to see the MS neuro in middle of March when we assumed she would be offered a choice of these,she has been a bit worried about the side effects of some but had recently got her head round it and done a lot of reading up and had decided on which she would have liked to try(copaxone) if it were offered. Both of us “a bit pissed off by this” is a bit of an understatement!

#5

I can understand some of the older less effective drugs being retired, but only if it means the newer treatments are available for first line use. The news about Copaxone is disappointing, as it’s the only one to be proved safe in pregnancy.

#6

What about people like me who have got a CIS diagnosis and only eligible for Rebif, Betaferon, Avonex and Copaxone? What will we be eligible for? I’ve recently stopped Rebif due to low wbc, awaiting bloods and review in 2 months with neurologist. Will she be able to restart Rebif or offer an alternative or not?

#7

I’ve emailed my comments to campaigns@mssociety.org.uk and submitted them to NICE too.

#8

I’m concerned by this. I got diagnosed end of September and have not been offered any Dmd drugs yet. I find the whole process so frustrating, when I was Cis the Neuro said they may decide to put me on dmd but nothing came about, now I’m actually diagnosed with RRMS with “quote” active mri I get nothing. I’ve another mri this weekend, but I’m not sure what will happen after. I looked into dmd after the Neuro mentioned dmd and was thinking copoxone as I didn’t like the sound of the side effects of the others. The whole process is so slow and now it looks like I won’t get a choice.

#9

The closing date for submissions to NICE is 24th January, so no decision will be made for a while. And for all we know, the decision will be to leave the availability of DMDs as they are now. Which is the reason why we should all send submissions to NICE about how the decision will affect us. In particular those of you who are newly diagnosed, you are the people to whom the decision is so important. Not to mention those still to be diagnosed with MS or indeed, CIS.

Sue

1 Like
#10

Hi all,

As mentioned above, NICE feel that all 6 DMTs are basically as clinically effective as each other but that only one is cost effective enough for the NHS and have therefore decided to only offer Extavia to new patients.

We (The MS Society), want all licensed DMTs to be available through the NHS and will be explaining to NICE why we think that these options should not be taken away for new patients. If you are concerned that you would be negatively impacted by this decision and want to tell NICE, you can submit a response directly to NICE by 24 January by filling out the form found on its website: https://www.nice.org.uk/guidance/indevelopment/gid-tag529/consultation/html-content (please note, you need to register for a NICE account to be able to contribute comments).

NICE appraisals apply to England and Wales only. NICE estimate a final publication date of May 2018, the NHS will have three months before they have to enforce this decision.

This decision by NICE is not yet final and does not apply to people already on one of these treatments.

Hope this helps clarify a little more,

Oliver - admin

#11

When one talks about a 33-35% reduction in relapse rates - it assumes one knows the cause and context of the

relapse. The triggers for a relapse remains unknown. And the levels of disability from each relapse can differ widely.

So, how can one do a qualitative and quantitative analysis of each individual and each drug and gain anything useful for recommending one drug over another?

#12

That’s exactly what I’ve done - submitted my thoughts to NICE.

#13

The Barts Blog gave their view today.

1 Like
#14

Barts are also encouraging people to complete an MS Trust survey on the NICE consultation: https://www.surveymonkey.co.uk/r/MTApwMS​

Sue

1 Like
#15

Some more information from the Barts Blog today and seems to suggest it could be a negotiating tactic.

1 Like
#16

Interesting, sneaky little bureaucrats.

Sue

1 Like
#17

Lets hope so, it makes sense. who else are they able to sell their drugs to in any real quantity if not the nhs.

1 Like
#18

Well, the NHS can’t fund drug research directly, so it funds them indirectly. Call it a subsidy.

“DMD” should be called “Research Modified Funds”.

Fay