UK members - Act now to stop the proposed withdrawal of vital COVID medicines!

[bennevisplace]

Harvist and others reported a few days ago the announcement by NICE of a cull in the various COVID medicines approved for NHS use. As a result, the options for treating immunocompromised individuals with COVID soon after symptoms appear, thereby avoiding progression, would be reduced to just one antiviral, Paxlovid, which for certain individuals including CLL patients is contraindicated. healthunlocked.com/cllsuppo...

The announcement by NICE is actually a DRAFT PROPOSAL FOR PUBLIC CONSULTATION. nice.org.uk/news/article/ni... so there is every opportunity for us to make our views known.

As most people will know, none of the approved monoclonal antibody medicines can be relied upon effectively to treat COVID variants now dominant or likely to be over the coming winter. We are left with two antivirals that are authorised to be given within 5 days of onset of symptoms - Paxlovid and Molnupiravir - and one within 7 days - Remdesivir.

Contrary to doubt cast by NICE on the effectiveness of the latter two drugs, all published lab studies to date have shown them to neutralise all COVID variants, including emerging variants of concern. At least, I don't know of any such studies showing otherwise. Nor do I know of any relevant clinical studies. If anyone does, please shout!

In any case, Paxlovid and Molnupiravir each have their own, quite serious contraindications. A percentage of immunocompromised individuals with COVID will not be able to use one or the other, and for a minority neither will be an option. Unlike the other two, Remdesivir is not an oral medicine, and must be given by infusion in an outpatient setting. Despite this inconvenience, NICE should ensure it remains on the CMDU menu.

To make your voice heard, you can of course

write to NICE direct, as it's a public consultation, at any stage. Right now, it seems a good idea to stir up the blood cancer charities who are big on patient advocacy e.g.

bloodcancer.org.uk/about-us... BCUK's website makes no mention of the issue in the COVID treatments page. I would expect BCUK to get on the case, and to give some immediate feedback to an email.

[annmcgowan]

Hi I contacted BCUK recently re my concerns in this matter. They assured me they were aware of this and were addressing it through the channels they have access to on our behalf.

Ann

[bennevisplace in reply to annmcgowan]

Well done Ann. Don't let that deter other folk from expressing their concerns. Also:

leukaemiacare.org.uk/about-...

leukaemiauk.org.uk/news/

[chillsome]

I was given Paxlovid recently when I got Covid and have just read in your post that it is contraindicated. Please can you explain if that means it will have just been ineffective or if might have caused other problems. Thank you.

[bennevisplace in reply to chillsome]

Sorry, my reply below was intended to be to you.

[bennevisplace]

This is the NHS advice on Paxlovid, including contraindications, i.e. when it should not be used because it could be detrimental to other medical conditions... nhs.uk/medicines/paxlovid/w...

...or negatively interact with other medications nhs.uk/medicines/paxlovid/t...

More detail (which warns me against taking Paxlovid alongside one of my regular meds - glad I looked!) gov.uk/government/publicati...

[RogerPinner]

Thanks Bennevisplace, good advice, but having read the NICE draft guidence I am totally confused.

Paxlovid we all know about and for many has been a lifesaver. Tocilizumab (also called RoActemra), and Baricitinib (also called Olumiant), are totally new to me.

The old favourites Casirivimab plus imdevimab (also called Ronapreve), and sotrovimab (also called Xevudy), are now considered 'ineffective'....no surprise, but Molnupiravir (also called Lagevrio) and Remdesivir (also called Veklury) are being removed because of cost consideations, even NICE isn't saying that they don't work.

So back to Tocilizumab (also called RoActemra), and Baricitinib (also called Olumiant). What do we know about them, has anybody on this site been treated with them, are they contra indicative to any of the BTKs or venetoclax?

What a farce.

Roger

[bennevisplace in reply to RogerPinner]

Roger, those two drugs aren't familiar to us because, as per the NICE draft guidance cited above, they are only used to treat hospitalised patients needing supplementary oxygen.

[RogerPinner]

Then that's worse than I thought. Effectively it means unless or until you are really ill the only treatment available will be Paxlovid, which is contraindicated with ibrutinib and venetoclax, and which for all we know may not be effective against the next variant to come along.

At the same time the Govt. is supporting a trial of Evusheld which the NICE paper has already dismissed as ineffective against the newer variants. Is this a case of the left hand and right hand not knowing what each are doing, or is it something more sinister.

Roger

[bennevisplace in reply to RogerPinner]

On your last point, I think gov.uk dismissed Evusheld long before the advent of Omicron. The fast-moving goalposts versus the time lag of the new trial and NICE review ensure that the NHS will never use Evusheld, and the whole charade will be exposed as pointless. Next year I expect AZ to unveil Evusheld Mk II drugdiscoverytrends.com/ast...

Re Paxlovid, you're "dead right". For some immunocompromised Covid patients this could be a matter of life and death.