I wonder if anybody got Evusheld in the UK.

[vepiskop]

I am immunocompromised. I am on ibrutinib for 9 years and although I am progression free, my immunoglobulins have declined to a point that I needed IV IG. However, I stopped since Covid and I got back into constant antibiotic treatment. With Covid I live in fear dispute using protection and isolation. I had 5 doses of Pfizer vaccine but no antibodies. The only help I get from these is probably some T-lymphocyte immunity.

I live in London and I keep asking my doctor for Evusheld (antibodies against Covid) but I am still waiting. I read an article in the Guardian a couple of weeks ago about how the UK government is dragging their feet in providing Evusheld to vulnerable patients like myself. I wonder if anybody got Evusheld anywhere in the UK.

Best wishes to all in our community. You have been a a great source of help and valuable information since I was diagnosed in 2009.

Vepiskop

[annmcgowan]

High the government as still dragging their heals in Evusheld. The latest delay is resection. They are researching its impact on the omicron variant before purchasing. Don’t think any other countries who have purchased it did this but I could be wrong.Ann

[HopeME in reply to annmcgowan]

Is it available via private pay in London? That might not be an option given cost but something to possibly consider?

[Eucalyptus22 in reply to HopeME]

That's a good question and one I'd like the answer to. According to Blood Cancer UK it isn't possible to purchase it privately as the only order AZ are negotiating is with the UK government. I've written to AZ about where we can buy it.

[HopeME in reply to Eucalyptus22]

It’s very frustrating here in the US as well. I read an article today that said the US government claimed it had purchased all available Evushld from AZ but AZ stated that wasn’t true. It then went on to state that of all the doses released to the US government only 25% had been used. I don’t understand why this is so hard. Good luck to you.

Mark

[Flute117 in reply to HopeME]

Mark,I also do not understand why this is so difficult. I had Evusheld two weeks ago at a NJ hospital cancer center. They told me they had a lot of it and my vials were marked with a June 2022 expiration date. I fear that so much of this will be wasted instead of going to those like us that really could benefit from it.

Carol

[bennevisplace in reply to annmcgowan]

Hi AnnDo you have any info on those studies into the efficacy of Evusheld against the Omicron variant?

[annmcgowan in reply to bennevisplace]

No they it is my understanding are underway but no information yet.Ann

[vepiskop in reply to annmcgowan]

It is sad! The government wants to forget there is Covid. Omicron is still doing rounds and most people have no symptoms. Nobody wears masks and the chances of catching is very high. I wanted to go to Greece to visit my elderly mum this summer. But if I catch Covid there, there is no paxlovid for me…I don’t have any health insurance in the EU after Brexit. I could buy a travel insurance but it does not cover paxlovid or travel back on a plane with Covid. 😩

[annmcgowan in reply to vepiskop]

Your right every is behaving as if covid is over, encouraged by the government who trying for herd immunity. This is a very difficult situation for us. Sorry to hear you can’t visit your mum as a result of this.Ann

[G1llHa1n in reply to annmcgowan]

Ann, I don't think the government is bothered about herd immunity - they just want us to stop making a fuss even though their neglect could kill so many of us. it appears they don't want to use money that they could use to fatten the coffers of their friends, businesses and donors.

[FairweatherSailor in reply to vepiskop]

I agree that it’s a very difficult situation. Regarding travel insurance you may well be eligible for the new GHIC card valid across EU (and it’s free) but of course it doesn’t cover repatriation. We have started flying and use FFP3 masks and Taffix spray, so far so good but it’s a risk !

[vepiskop in reply to FairweatherSailor]

Many thanks for this info! I just applied!

[Annie1920 in reply to FairweatherSailor]

Uk citizens are entitled to GHIC which covers them in the same way as a native citizen.. but.. Never forget some countries don't cover their citizens 100% I don't know abt most countries set up but France covers roughly 80%. So you or your travel insurance are liable for the 20%..when I had a burst appendix the 20% was €52,000.. Luckily I had travel insurance...

[FairweatherSailor in reply to Annie1920]

wow . So the total bill (excluding repatriation) was €260,000 and your €52,000 was just the 20% that the GHIC (or EHIC) didn’t cover ?

[bennevisplace]

In the UK it's only available in a clinical trial unfortunately. You could try contacting clinics in France if you are willing to pay.

Here's a UK blogger with his finger on the pulse, worth checking from time to time eve.gd/2022/04/28/the-curre... I guess he is immunocompromised too. The Labour peer Lord Mendelsohn, mentioned under the 4th May update, is on the APPG for blood cancer, a condition affecting his wife Nicola, a prominent business person.

[bennevisplace in reply to bennevisplace]

BTW the diagram featured in the above-mentioned blog is out of date, in that since Brexit the regulatory approval of new medicines in the UK is the sole responsibility of the MHRA.

For all things Covid, NICE's usual role of screening medicines for cost effectiveness prior to NHS use was evidently short-circuited, central government negotiating direct with suppliers and the Treasury footing the bill without troubling the NHS accountants. While that streamlined process was applied to drugs like Sotrovimab and Paxlovid, earmarked for treating immunosuppressed patients with Covid, it's by no means certain that likewise it will be applied to Evusheld. If it's passed to NICE for review, expect a long wait.

[vepiskop in reply to bennevisplace]

Many thanks every one! Let’s keep in touch with updates on Evusheld and fingers crossed…

[Annie1920 in reply to bennevisplace]

evidently it has been approved as safe by MRHA But has been passed to nice who are 'testing its efficacy' and the results won't be out til next spring at the earliest sadly

[bennevisplace in reply to Annie1920]

Yes, discussed at length a few weeks ago healthunlocked.com/cllsuppo...

[vepiskop in reply to bennevisplace]

Many thanks This is a very useful link!

[Pj111 in reply to bennevisplace]

Do you know which clinics in France are offering Evusheld to purchase privately? Thanks so much

[bennevisplace in reply to Pj111]

Sorry no.

[Yuck]

Hi vepiskop

It is ridiculous. As was posted by bennevisplace 2 months ago, “both” Sotrovimab and Evusheld proved effective against Omicron BA.2 in animal testing through different mechanisms. biorxiv.org/content/10.1101...

Nevertheless, the U.S. FDA pulled Sotrovimab treatment just before the published in vivo results, while the U.K. continues with successful Sotrovimab treatment in high risk patients who test positive for Covid and are not hospitalized..

The opposite is true with Evusheld. The U.S. embraced it, but the U.K. is stalling. Go figure.

Frustrating, for sure. Perhaps, government workers are simply over worked and under staffed.

Best to all in the U.K. seeking Evusheld!

At least you have both Paxlovid and Sotrovimab, but that’s little comfort when seeking prophylactic protection since the vaccines are commonly ineffective in those in treatment with Ibrutinib, for example. .

~ Yuck

[FairweatherSailor in reply to Yuck]

The Evusheld situation in the UK is frustrating but do remember that the health systems in UK and USA are very different. In the UK most people do not pay health insurance and get "free at the point of need" treatment from the NHS. It's all funded from the public purse (the taxes that we pay). So NICE does have to be careful about which treatments it approves as they are tasked with making best use of public funds. In spite of this issue with Evusheld I personally think that the NHS is a truly remarkable organisation staffed by the most wonderful caring people and it is an absolute credit to the UK. I am so glad that I am supported by one of the best oncology hospitals in the world (Royal Marsden) and I don't have to rely on medical insurance or pay a penny for any treatment or investigations that I receive. I am sure that the US system also has many benefits too , but I am very happy with our NHS !

[Yuck in reply to FairweatherSailor]

I totally agree with you. The U.S. entire health system has numerous shortcomings, too depressing to list. I will mention one: the focus is on expensive hospital treatments, not preventive medicine.Best,

~ Yuck

[Yuck in reply to FairweatherSailor]

FYINTEREST:Here is a description of the U.S. health system from The Guardian, free for iPhone users, not sure about others. apple.news/A22g2vedgS-ygvzv...

[AnneHill]

As usual it comes down to money. A deal with AstraZenecca will need to be reached before we can get it. NICE have agreed it and now the government need to buy it.I have continued to have ivig. Despite being nervous I have been happy with the infection control. I dont need public transport though.

I feel happier now there are treatments for covid but I dont want to take chances. Lets hope for the best, Anne uk

[Jm954 Administrator in reply to AnneHill]

That's interesting, when did NICE agree it Anne?

[AnneHill in reply to Jm954]

I cant remember where I read it. The MRHA has agreed it but I am sure I read, possibly in a newspaper that NICE agreed it.It seems that even if a drug is agreed the NHS dont supply it.

I hope Im not mistaken. Anne uk

[Annie1920 in reply to Jm954]

Nice haven't agreed to it.. Its MRHA that has passed it as safe.. Its NICE that's dragging its feet

[Jm954 Administrator in reply to Annie1920]

NICE is doing a technical appraisal but not due to report until March 2023

[JIDD]

Sign the petition. Its only got 13,000 so far petition.parliament.uk/peti...

[vepiskop]

I signed! Many thanks!