4 of 5 treatments for covid in immunocompromis... - CLL Support

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4 of 5 treatments for covid in immunocompromised being removed in NHS

Harvist profile image
18 Replies

mol.im/a/11447861

"Four Covid drugs which have kept thousands of vulnerable Britons out of hospital were quietly removed last week, after the NHS spending watchdog pulled funding for them.

While the Covid vaccines and boosters provide strong protection against serious illness for most of the population, about 500,000 people suffer with conditions that mean their bodies do not respond to the jabs, leaving them at serious risk from the virus.

Since last year, these patients – who primarily have blood cancers such as leukaemia, kidney disease or have had an organ transplant – have been able to access five anti-Covid drugs which prevent them from falling seriously ill and ending up in hospital. But on Wednesday, the National Institute for Health and Care Excellence (NICE) said it will withdraw four of them from NHS use as they are no longer deemed cost-effective"

So what do we all do now? The one remaining treatment, paxlovid is unavailable to me as I am on heart attack drugs.

Evusheld, whatever its weaknesses seems to be the only thing we can hope for.

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Harvist profile image
Harvist
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18 Replies
sparkler profile image
sparkler

Yes, Harvist, it’s very worrying. I posted this link on another thread the other day but it might be useful here too, as it gives a bit more info… though not the info we’d like to read.

medscape.co.uk/viewarticle/...

Take good care.

Love to all.

sparkler x

CLLerinOz profile image
CLLerinOzAdministrator in reply tosparkler

I also posted about it last week on our SARS pinned post:

healthunlocked.com/cllsuppo...

sparkler profile image
sparkler in reply toCLLerinOz

Yes, CllerinOz, I read your post, though not at the time. I’ve not been able to keep up to speed here as much as I’d like - crazy life atm 🙃. Sorry for the repetition but at least it’s had lots of coverage. If you think it’s too much then please delete my comment.

CLLerinOz profile image
CLLerinOzAdministrator in reply tosparkler

No need to apologise. I 'm pleased you've highlighted the situation. I tossed up whether to post separately about it or as a reply to the SARS post. Sometimes it's a toss up. It's important people know about these changes so thanks for giving it extra weight. 😀

sparkler profile image
sparkler in reply toCLLerinOz

Thanks. I’d also pondered over giving it a stand-alone post… glad I didn’t 😅

sparkler x

olyocl profile image
olyocl in reply tosparkler

hello my good friend sparkler, I notice in the article it said NHS England, have you heard if it will also apply to Scotland. When I had Covid in March I was treated with Sotrovimab.

Sending best wishes to you and everyone with CLL.

kitchengardener2 profile image
kitchengardener2 in reply tosparkler

Well that's us well and truly told what NICE, the government and the NHS think about our chances of survival.

I am just so afraid now of what would happen. It was a cushion that gave a bit of comfort. What happens now .... I guess we just take our chances and either live or die.

I have been trying to find out if Covid treatments are available in Spain, we have a holiday booked for two weeks time. I now wonder what would happen if I contracted Covid whilst away. Our insurance will, we think cover any costs but if the treatments are withdrawn, it doesn't make any difference to will pay.

Ghounds profile image
Ghounds

It's a disgrace. I despair.

camper2 profile image
camper2

glad this was posted as I have missed this! I too had Sotrovimab in April 22 as Paxlovid interacts with Acalabrutinib. What do I get now, any ideas?

Pageboy profile image
Pageboy in reply tocamper2

I am on Acalabrutinib. I have just had Covid and about to take my last dose of Paxlovid. You just come off the Acalabrutinib for 8 days and its fine. However, the situation itself is far from ok.

kitchengardener2 profile image
kitchengardener2 in reply toPageboy

I take Acalabrutinib as well. After reading this information this morning, I contacted my MP and the Health Secretary. I also emailed BBC Look North and a very nice lady just rang me. She said that she has looked into this and discovered that there are other monoclonal antibody treatments which may still be available. She is going to do more work and then get back to me with more information. They may then ask me to do recording for their programme. We have to get our situation noticed. I really couldn't stand not being able to see people for another lengthy period. This will be the 3rd Christmas we have spent alone.

Pageboy profile image
Pageboy

That is disgusting and frightening. Having just had Covid and received Paxlovid, I am sure I would have struggled without it. With no options, this Gov is throwing vulnerable (tax paying!) people into the lions den to see how they get on. Will there still be options if we are hospitalised? I could go on a rant now so I’ll back out.

Saju21 profile image
Saju21

Hi all. I clicked on the link. There are 3 available, not one.

So of the ones approved where can I find advantages / disadvantages? Of those not approved are any do much better to be worth pursuing privately - and would PMI cover cost? Anyone used that route to get quicker treatment ( someone posted a few weeks that it was stressful getting treatment couriered via NHS)

Extract of nice recommendations for covid treatment
CLLerinOz profile image
CLLerinOzAdministrator in reply toSaju21

As you've noted, the NICE draft guidelines recommended Tocilizumab and Baricitinib but only for those hospitalised with Covid-19 who require supplemental oxygen. For those who do not require hospitalisation, only Paxlovid is recommended. There appears to be a gap for those who require hospitalisation and no supplemental oxygen as 'no technologies recommended' is currently recorded for that group. Similarly, there's a gap for those who may not be able to take Paxlovid because of drug interactions that prevent them from doing so.

The guidelines state: "Several other medicines are not recommended at this stage. However NICE stands ready to work with companies and NHS England to look for solutions during the public consultation."

healthunlocked.com/cllsuppo...

RogerPinner profile image
RogerPinner

I have immediately written to my MP (again), though I know it won't do any good. As Jackie said, we should all be even more cautious.

The good news is that ZOE (who I trust much more than the ONS in this matter), confirm the case numbers are presently falling.....the bad news is they predict a spike starting in the new year.

Roger

LeoPa profile image
LeoPa

How expensive are those drugs? Is it possible to have them prescribed and pay cash for them?

bennevisplace profile image
bennevisplace

The statement attributed to NICE, casting doubt on the effectiveness of all four drugs against current variants, is unfounded IMO. What clinical evidence is there that either Molnupiravir or Remdesivir have been ineffective? (this would be contrary to laboratory studies, which show that all three antivirals effectively neutralise all variants).

If there is compelling evidence against these drugs, it would be of great medical significance and should have been published by now.

And NICE, please remember that both Paxlovid and Molnupiravir come with serious contraindications. For some, Remdesivir has to be an alternative.

stevebran profile image
stevebran

Very sad but predictable. Thanks for pointing it out, the more we know the better we can resist. Covid isn’t going anywhere so perhaps now would be a good time to get commitments from the politicians likely to be in charge after the next election.

Definitely fingers crossed for Evusheld

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