Important Statement from NRAS about access to medicines

[Anita-NRAS]

Are you on an advanced therapy? (Biologic/biosimilar/JAK inhibitor), if so, this is important news for you to be aware of. Please see the statement published today on our website about the Regional Medicines Optimisation Committee (RMOC) Advisory Statement on sequential access to biologics.

nras.org.uk/news/important-...

[Biofreak]

Good news. Great to have clarification.

[Agoodlife in reply to Biofreak]

Would this limitation also go both ways?

[Biofreak in reply to Agoodlife]

I don't know Agoodlife. Perhaps Anita can answer.

[helixhelix in reply to Agoodlife]

How do you mean, both ways?

[Agoodlife in reply to helixhelix]

Do you mean limit the access to meds because of their negative effect together or their need for new ones.?

[Agoodlife in reply to helixhelix]

ncbi.nlm.nih.gov/books/NBK5...

[helixhelix in reply to Agoodlife]

You’ve lost me!

The whole drug approval route has quite clear guidelines for determining whether benefits of the drug outweigh the risks, and I think also whether a new drug offers something other than already exists. Whether you agree with the way in which the guidelines are set is a different question, but there is a threshold that drugs must meet to be put on the market.

There is also the yellow card system to flag up problems, and some drugs have been removed from the market because of that.

There are also some drugs where this process hasn’t been completed or where full testing hasn’t been carried out but since they do have a benefit they cam be marketed off licence. Sometimes because they are considered to be very safe, like low dose nalaxon is I think not licensed for use with RA. Or because they are still very experimental, like some cancer drugs where people are prepared to take big risks.

[Biofreak in reply to Agoodlife]

The NRAS sought clarification on behalf of members and patients who had been told by their doctors that if they had already tried 4 different biologic treatments and they had all failed to control their RA then they wouldn't be granted any further biologic treatments. It was thought that the refusal was more about cost than anything else. This statement from the RMOC clarifies that sequential access to biologics should not be based on local cost cutting initiatives.

[helixhelix]

Well done NRAS for fighting our corner.

[Mmrr]

Is it the same for Scotland?

I have not been made aware of any limitations on my treatment options, but it is looking increasingly likely that I will be moving to my 3rd 'advanced' therapy soon.

[Biofreak in reply to Mmrr]

I'm currently on my 4th biologic but I'm in England. I have never been told that there is a limit to the number of treatments I can have either Mmrr but I think some people have been told that 4 is the limit.

[AgedCrone in reply to Mmrr]

I think a lot of people having failed on 4 Bio, drugs, think because of the highly publicised cost issues arising in the NHS, they are convinced their personal refusal is because of costs and not clinical reasons.

In the last year with so many bio similars coming on to the market, the cost of the original biological drug has dropped dramatically, and quite often the reason is Rheumatologists genuinely think a 5th Biologic Drug would not be a clinically good decision....but they fail to explain that sufficiently well.

[GranAmie]

thankyou Anita - but will other regions take it up ... Scotland, Wales,... N Ireland??

[AgedCrone in reply to GranAmie]

Not if you watched the news tonight on how badly NHS Wales is doing. Someone has at last pointed out how badly it is doing ...even mentioned it was all down to bad management.

Maybe things will now get shaken up there?

[Otto11]

That’s great news as I had a long wait without meds waiting for funding for my 3rd Biologic. It prevented me getting on the original Mabthera & having to start Truxima instead which has not controlled my lung inflammation or anywhere else for that matter.

[Agoodlife]

I researchgate.net/publicatio...

[Agoodlife]

Would like to know an answer

[Clare-NRAS Partner NRAS in reply to Agoodlife]

Was there a specific query you had on this link?

[Agoodlife in reply to Clare-NRAS]

Yes there actually is, a bit hidden though in my view.New meds give new symptoms of Inflammatory disease that lead to new meds to control new symptoms and new side effects. Is this something we really be happy for? Thank you for your interest 🙏🏻

[KittyJ in reply to Agoodlife]

Agoodlife the link is about people being allowed more than 3 tries on biologics 😊

[nomoreheels in reply to Agoodlife]

Definitely! I think you are looking for an argument where there isn’t one. We know you're med phobic but do you really have to be negative about those that could really help people who haven’t responded to other meds? Even if there are side effects they may be tolerable, you don't know & so what if you need to take another med to ease side effects, it can very much be worthwhile if the biologic brings you under control. Better to take another med alongside a biologic that works than need joint replacements surely?

[Agoodlife in reply to nomoreheels]

You are so right. But I thought this forum was how we try ourself to treat our RA and how it has worked on us not excluding the ones that are not using the ones that find a way that has helped by supporting the immune system with help of lots ofserious research that has helped to understand ones RA problems, and actually succeeded.with a lot of personal suffering, believe me)I personally am very excited about it. I’m sorry if I have offended anyone and are well aware of the pain and suffering that many on this forum go through.🙏🏻😨

[nomoreheels in reply to Agoodlife]

I'm not excluding anyone, never have, but we’ve had this subject dragged up before so not willing to go through it again if you don't mind. My point was that biologics are necessary for those who, if they've chosen to try, haven't be able to control their disease any other way, medically or otherwise. I'd rather be in a world with them than without them & forced to live in a wheelchair in pain. So, yes, I do think it's something to be happy for & thank NRAS for fighting our corner.

[Clare-NRAS Partner NRAS in reply to nomoreheels]

Thank you. NRAS is always looking to ensure that those who want access to the best evidence based treatments that have been approved by NICE have unrestricted access and so are pleased with this latest statement that ensures it is crystal clear that local pathways should not and must not deviate from these agreed national pathways.

[Agoodlife in reply to nomoreheels]

I am with you 100% on this. those who have chosen the meds do need them and are quite understandably thankful. I am not criticizing anyone.Just presenting an alternative view for treatment that amazingly has worked for me. So far.

[helixhelix in reply to Agoodlife]

What’s the question?

[Clare-NRAS Partner NRAS]

Dear all

NRAS has not been made aware of any 'restrictions' on access to advanced therapies in N. Ireland, Scotland or Wales the reason we'd asked the question of NHS England was because of the issue being brought to our attention in a number of areas in England due to CCGs and Trusts imposing differing pathways of care to our interpretation of NICE Guidance.

This statement is a very positive move to help CCGs (Clinical Commissioning Groups) to bring their pathways in line. Devolved nations don't have CCGs so to date we are not aware of any 'access' issues. We are also calling for the SIGN guidelines (Scotland) to be reviewed as these are woefully out of date.

I hope this answers your questions.