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New MS Drug Refused!

Hi everyone,

just read on here that a new drug for RRMS has apparently been refused again by NICE.

Does anyone know of this drug or have had experiences with this drug?

Asking as , if i have read this right; that the MS society has submitted evidence that it works to NICE but they are saying it doesn’t work well enough… or words to that extent anyway.

Just also wondering about how much are we (people with MS) looking at to pay for treatments like this if we all have to go private?

Be intrigued to hear others points of views on this please.

Thank you in advance for any / all replies given.

Hope you well

tc

Anna x

Hi Anna,

I do know about it, but only because it’s already been in the news before. I don’t have any personal experience of it.

I don’t think the “average” person has any chance of paying privately for DMDs. I don’t know the exact price, but I’m very sure it will be thousands per year, not hundreds. Maybe about £20K, as a rough order of magnitude.

Besides, it’s not just a case of if you can afford it, you can have it. You still have to find a neuro licensed and willing to prescribe. I think ALL neuros in this category in the UK are going to be affiliated with the NHS in some way, even if they accept private patients as well.

For that reason, they may not be willing to prescribe something to their private patients that their NHS patients cannot have.

We ran up against this when my dad needed a specialist cancer drug for a rare and very aggressive form of cancer. He could have afforded to pay, but he wasn’t allowed to just do that! In the end, he did get it funded by the PCT (but precious little good it did him), but you can’t just walk up and say: “I’ve got the cash, now please give me the drug!”

Tina

I am currently taking the drug that you are referring to - Gilenya (Fingolimod). I live in Australia and the government subsidise it here so it costs me $34 per month.

For me it seems to be working well - I haven’t had a relapse since I started on it.

I think that NICE were not keen to fund it because:

  • It is very expensive - around £20,000 p/a
  • It doesn’t look to be more effective than Tysabri

It will be interesting to see if any of the upcoming treatments are approved by NICE - I am beginning to think that they will not be…

How much does Tysabri cost though?Isn’t it about the same price?

I have also been prescibed Gilenya.I’ve been taking it for about 3 months now.I live in Switzerland.As far as I know,there are no restrictions on prescribing it here.

Rejected by NICE because of cost so it will beyond the reach of most cash strapped mortals in spite of it being highly effective and extremely convenient - pill form. Roger

It was rejected because of “cost effectiveness”. NICE are saying that it is too expensive and that additional benefits have not been demonstrated against Rebif, the most effective of the injectable DMDs. It’s all hot air. It’s been approved just about everywhere else. The data are compelling - fingolimod/Gilenya WORKS; it works better than the injectables (but not as well as Tysabri) and for those of us who are still relapsing on injectables but aren’t eligible for Tysabri, it’s our only hope at the moment. Sure, there are things coming through that are looking really good, but they are at least 18 months away from being released in the UK (IF they get approved).

NICE are happy to spend millions allowing elective cesareans so that women can choose to have a baby by operation and on the date that best suits them rather than have to give birth the way nature intended, but they won’t help me and others like me to stop becoming more disabled.

ANGRY? DAMN RIGHT!

Karen x

I have just sent some feeback to NICE concerning this matter. I suggest everyone does the same. Thinking of writing to my MP too.

Anyone else got any ideas about making some noise so that something gets done about this?

I have had such a hard time on Betaferon and am currently having a hard time on Copaxone due to site reactions and various other horrible side effects.

Kate

I have just sent some feeback to NICE concerning this matter. I suggest everyone does the same. Thinking of writing to my MP too.

Anyone else got any ideas about making some noise so that something gets done about this?

I have had such a hard time on Betaferon and am currently having a hard time on Copaxone due to site reactions and various other horrible side effects.

Kate

Hi Karen,

I started a thread about this very subject on 24/11 called How Nice of NICE but there wasn’t much interest shown. I agree it’s a complete waste of NHS money and resources to allow elective caesarians which cost thousands more than normal births. I also emailed NICE that same day but they’ve not have had the decency to reply. This is what I said:

Dear Sirs,

can someone please explain to me why NICE have authorised elective caesarians to be available to any woman who wants one but keep deferring the decision about NHS funding for Fingolimod? It would appear that NICE are happy to waste money for frivilous reasons on women ‘too posh to push’ but ignore the very genuine health needs of many who suffer from Multiple Sclerosis who could benefit from this important oral drug.

Thankyou for your attention.

Yours faithfully,

We really need to get on their case about this and I will be contacting my MP also, please, please everybody put some pressure on them too. Sx

Nice letter - I may well plagiarise it

Kx

Be my guest Karen. Sx

Hello all im from the midlands uk,iv been one of the lucky ones who is on the trial for the fingolimod,all is well compared to injecting,as for the drug its not all smelling of roses,im tired alot more than when on rebif,i have to get a blood test most weeks because the blood counts can go low and can cause damage that cannot be reversed,a couple of times my nurse phoned me and told me stop takeing it because my counts are low,so that time your not takeing it the window is open for a relapse,my nurse was telling me storys of people who its been fantastic for and others its not,just remember its not a magic drug that will work for everyone Hope this helps HAPPY CHISTMAS AND A MERRY NEWYEAR

Everybody, I hope you are all as well as can be and keeping warm it’s really taters in London today! Earlier in this thread I posted about contacting NICE on 24/11 with this question:

Dear Sirs,

can someone please explain to me why NICE have authorised elective caesarians to be available to any woman who wants one but keep deferring the decision about NHS funding for Fingolimod? It would appear that NICE are happy to waste money for frivilous reasons on women ‘too posh to push’ but ignore the very genuine health needs of many who suffer from Multiple Sclerosis who could benefit from this important oral drug.

Thankyou for your attention.

Today I received their response:

Dear Susan,

Thank you for contacting the National Institute for Health and Clinical Excellence (NICE) and sharing your views with us.

NICE has recently updated our guidance on the topic of caesarean section. However, contrary to what you may have seen in the press, the guideline does not recommend that all women should be offered the option of a caesarean section. Rather, where a woman has a significant fear of childbirth, her anxiety may lead her to ask for a caesarean section. In such cases, the guideline says that she should be offered referral to a healthcare professional with expertise in providing support to talk through her fears and help her to address them. We know that this support can often help to allay women’s fears of childbirth sufficiently for them to be able to attempt a vaginal birth. But in some cases, the anxiety is not allayed and the women may feel that vaginal birth is not something she can face. In these circumstances she should be offered a planned caesarean section.

You can download the relevant guidance from the following pages of our website:

Caesarean section update: http://guidance.nice.org.uk/CG132

The shorter version of the guidance aimed at patients and carers may be of most interest to you: http://www.nice.org.uk/nicemedia/live/13620/57166/57166.pdf

If you have any questions arising from the recommendations made in this piece of guidance, please do not hesitate to contact us.

Fingolimod, for the treatment of relapsing-remitting multiple sclerosis, was referred to NICE in November 2008 and is due for publication in April 2012. Unfortunately, this technology appraisal was rescheduled in January 2010, July 2010 and February 2011. This was due to resource constraints and efficiency scheduling requirements and also, following advice from the manufacturer, to align with the latest regulatory expectations. Further information on this can be found on the relevant page of our website: http://guidance.nice.org.uk/TA/Wave20/71#schedule

I hope this information is useful to you.

Kind regards

Angela Wallace

Coordinator (Enquiry Handling)

National Institute for Health and Clinical Excellence

So I have responded:

Dear Ms Wallace,

thankyou for sharing the views of NICE with regard to authorising expensive elective caesarians. I too have a “significant fear” of my MS progressing and suffer much “anxiety” over it so on that basis I too should be able to choose which drug I can take. Your response does not address the question as to why NICE has refused to authorise Fingolimod to be funded by the NHS, perhaps you could now explain that for me? Thankyou.

Yours sincerely,

Let’s see what they say this time.

Thank you Susan for sharing the reply with us.

I agree that NICE totally bipassed your original question re: the drug you specifically were speaking of.

I too will copy your original letter and your last letter to them. I will hold back sending in my reply / support until you receive a reply from NICE again, if you don’t mind?

Reason being is if they try to defer your question again I can send them my similar request alongside a copy of your letters and a paragraph stating that they have ignored your request on 2 separate occassion. Thus adding weight to the argument that they obviously can not justify their reasoning for banning one drug and allowing another ( I know cesarians aren’t a drug but you understand i am sure and I will word it properly at the time).

After all we as people with MS did not chose this disease but women who get pregnant generally decide to have the child when discovering they are pregnant or before conceiving etc.

of course i understand fear and phobias can be challenging but surely counselling before conception would be a better option? for exampl.

Although i am not best placed to say this for definate as i am no medic.

just another opinion anyway.

but Here, Here to you hun for making the effort to fight our corner.

WD you

tc

Anna x

Hi Anna of course I don’t mind you copying my letter, the more pressure put upon NICE the better. I would like to know what, if anything, the MSS is doing aboiut tis refusal? I may have missed it on the site somewhere but there doesn’t seem to be much fuss being made.