UK Department of Health: Evusheld's in the lo... - CLL Support

CLL Support

22,509 members38,657 posts

UK Department of Health: Evusheld's in the long grass

bennevisplace profile image
51 Replies

This morning BBC Radio 4 reported that the DOH announced that Evusheld will not be available in the UK this year (it has regulatory approval). The DOH has handed Evusheld over to NICE for review and they are expected to come up with a draft report in the spring.

😕

PS The broadcast is a 1 minute slot at bbc.co.uk/programmes/m0019z8l starting at 2:06:45 (you may have to register to listen to this, but it's free)

Written by
bennevisplace profile image
bennevisplace
To view profiles and participate in discussions please or .
51 Replies
annmcgowan profile image
annmcgowan

Thanks for this post. I just do not understand the thinking behind this. I wonder where we go next!!!Ann

bennevisplace profile image
bennevisplace in reply to annmcgowan

I'm afraid it's reliance on self defence and early-stage treatments reserved for the immunosuppressed, and being prepared to press your case healthunlocked.com/cllsuppo...

Ghounds profile image
Ghounds in reply to annmcgowan

I don't think we'll be going anywhere much anytime soon....

annmcgowan profile image
annmcgowan

Thank you for this information very useful resource. I will continue trying to get my MP on board. Not even getting reply to my e mails. I won’t give up.Ann

Pekingese profile image
Pekingese

Thank you for posting, that’s a bummer 😩 So disappointing hopefully next year it gets approved🤞

Jm954 profile image
Jm954Administrator

I've submitted a detailed response to the NICE Scoping Consultation for Evusheld on behalf of CLL Support (the charity that supports this group). It closed on 12th August.

I've emphasised the urgent timescale required for the Technical Appraisal and hopeful approval and I know other organisations have said similar.

I've also emphasised the impact on the mental health of patients, carers and wider family of continuing some form of shielding and the isolation from wider society that not having any immunity brings. In addition, some patients cannot take the covid anti virals because of interactions with their necessary medication.

With winter and the pressure on NHS beds we do not want them full of immunocompromised patients with covid.

As well the proven efficacy of Evusheld, these additional considerations make a compelling case for urgent approval.

It was a very short timescale to respond to this so perhaps they understand the urgency. The stakeholder list was larger than usual because so many immunocompromised groups are affected by this decision.

We've done the best we can and I'm sure it will come eventually, let's hope it's soon.

Jackie

mrsjsmith profile image
mrsjsmith in reply to Jm954

Thank you for all your hard work Jackie, and who knows we may have a more amenable Healt Minister in September 🤞

Colette

bennevisplace profile image
bennevisplace in reply to Jm954

Jackie, thanks for your input to NICE. I do hope it persuades them. It was shocking to hear on R4 that NICE is planning to report in draft only in the spring (til then the long grass)

😡

Jetliz profile image
Jetliz in reply to Jm954

Yes THANK YOU also. I did get a positive and swift reply from my MP a couple of months ago but feel quite deflated by the delay now. We can only try and be positive. That's only if we all qualify anyway I'm not sure on that one now.

Wroxham profile image
Wroxham in reply to Jm954

Thank you Jackie.Sue

Peggy4 profile image
Peggy4 in reply to Jm954

Thank you.Peggy

annmcgowan profile image
annmcgowan in reply to Jm954

Thank you Jackie for doing this it means such a lot to so many.An

Poodle2 profile image
Poodle2 in reply to Jm954

Thank you so much Jackie x

AnneHill profile image
AnneHill in reply to Jm954

Thankyou for fighting on our behalf Jackie. I cant imagine having freedom to do as I like. My son bought us a holiday to Italy this time next year. We are all going. I wouldnt choose to go on a plane and Evusheld would help. Otherwise I will have to hope masks and hand gel will do the trick. I hope that your letter makes a difference. Other countries are having it. Anne uk.

Annie1920 profile image
Annie1920 in reply to AnneHill

All G7 countries are distributing it bar the UK sadly

AnneHill profile image
AnneHill in reply to Annie1920

I cant understand how the government can make excuses. It is about money I presume. I am hoping things may change when there is a new cabinet. I wont hold my breath waiting.

G1llHa1n profile image
G1llHa1n in reply to Annie1920

😡😡😡😡😡

Fran57 profile image
Fran57 in reply to Jm954

Thank you so much, Jackie. We really appreciate your (and others’) hard work on our behalf.Stay safe,

Fran 😷

RogerPinner profile image
RogerPinner in reply to Jm954

Jackie, thank you for representing our interests, again, though I firmly believe this is a political decision, and not a medical one. If l’m right, then assuming the government decision makers are not deliberately wicked, it must be a question of cost. Has anyone done a cost/benefit analysis, putting figures to the pros (and cons) of giving Evusheld to immunosuppressed people. Money is the only language this government understands.

Roger

HopeME profile image
HopeME in reply to RogerPinner

Hi Roger:

Before doing a cost/benefit analysis I’ll need to know how you want me to value the life of a CLL patient.

RogerPinner profile image
RogerPinner in reply to HopeME

Mark, it may be more a question of how do you value the death of a CLL patient....... no cost of BTK inhibitors, no venetoclax, no any other treatments, no hospital visits, plus keeping us alive longer increases the burden on state pensions. It's a win/win for the government, a lose/lose for us.

Roger

Jm954 profile image
Jm954Administrator in reply to RogerPinner

There are professional health economic people who do the calculations called QUALYS.

This link to the NICE website tell us how the assessments are made

nice.org.uk/about/what-we-d...

Jackie

bennevisplace profile image
bennevisplace in reply to Jm954

Once Evusheld received regulatory approval, advice on its deployment as immunisation against Covid should have been given to government immediately by the JCVI, as for the vaccines, and that advice should be in the public domain.

Referring Evusheld to NICE for technological appraisal is scurrilous, when by spring 2023 everyone knows the goalposts will have moved again.

RogerPinner profile image
RogerPinner in reply to Jm954

Jackie my point was to ask whether or not the blood cancer charities were doing their own sums to see whether the QUALYS figures could be challenged. There are always questionable assumptions and a degree of subjectivity in these calculations.

Roger

Jm954 profile image
Jm954Administrator in reply to RogerPinner

It's very difficult for the charities to do this as the economic assessments are done confidentially and include discounts that we are not aware of. It's not helpful but NICE does appear to try to approve everything it feels is a benefit for patients which is why it negotiates hard on discounts for the nHS.Jackie

RogerPinner profile image
RogerPinner in reply to Jm954

Thanks Jackie, I believe you if you say "NICE does appear to try to approve everything it feels is a benefit for patients", but why are NICE involved in approving a Covid prophylactic, which is effectively doing the same as the vaccines which haven't needed, and apparently continue not to need NICE approval. It's a different point I know, but it needs an answer from the DHSC.

Roger

Jm954 profile image
Jm954Administrator in reply to RogerPinner

I think it perhaps falls into a different category (as a treatment?) from vaccinations. I honestly don’t know.

bennevisplace profile image
bennevisplace in reply to Jm954

If I could intervene...

The vaccines and Evusheld fall under the heading "COVID-19 immunisations". Evusheld has often been described as a passive vaccine. In the UK it is most definitely approved only as a prophylactic, and only for immune compromised. gov.uk/government/news/evus....

Clearly, to my mind, within the advisory remit of the JCVI.

Furthermore, Evusheld is a COVID-19 medicine. Check the NICE website for how many such medicines they have technically appraised. None. Now there's one in the queue, start date TBA. The joke's on us.

bennevisplace profile image
bennevisplace in reply to Jm954

Sorry for banging on about this Jackie. Repeating myself on two posts, enough now.

Jm954 profile image
Jm954Administrator in reply to bennevisplace

I hear your frustration and I assure you it's mutual

annmcgowan profile image
annmcgowan in reply to Jm954

Hi Jackie in follow up to the latest news today on covid vaccines. The government have approved a new covid vaccine that covers past and current strains of covid including the newest omicron variants to be delivered in the Autumn. This adds insult to injury to our community in my opinion. This vaccine unlike evusheld will not go through NICE and will be offered to us who do not respond well if at all, in my case, to vaccines. It seems to me that this government is again discriminating against the most vulnerable in our society and robbing us of our human rights and liberties.

I know you do a lot of work on our behalf and am eternally grateful for this. I was just wondering if the gate is well and truly closed for evusheld for us or if there are still processes ongoing to prevent this, which is what I read into your last message? If their are,are you still hopeful and is there anything we can do to help ourselves?

I know it may be difficult for you to answer and you may not wish to at this point in time in this process you are engaged in on our behalf but these restriction on our freedoms are becoming beyond a joke and an insult to us given all of the G7 countries have this drug except the U.K.

Kind regards

Ann

Jm954 profile image
Jm954Administrator in reply to annmcgowan

I don't feel it's closed. NICE approved a pre exposure prophylaxis medication for people who may be exposed to HIV so the precedent is there.

Jackie

annmcgowan profile image
annmcgowan in reply to Jm954

Thank you Jackie that’s encouraging 🤞we get it. Thank you again for the work you do on our behalf.Ann

bennevisplace profile image
bennevisplace

I'm not sure how sorry we should feel for Astrazeneca in this. Evusheld seems to have sold pretty well in the USA and is in use, to some extent, in several other countries.

AZ is headquartered in the UK, where the company agreed, as commercial partner to the Oxford Vaccine Group, to tie up a lot of resources producing a lot of vaccine at cost price - 50 million doses in the UK, 2.5 billion worldwide - foregoing billions in revenue while Pfizer and Moderna were enjoying a bonanza.

So AZ may have felt a bit hard done by when the UK government first reneged on a pre-order of 1 million doses of AZD7442/ Evusheld in April 2021, then failed to buy in after the MHRA approved the drug in March 2022.

annmcgowan profile image
annmcgowan in reply to bennevisplace

Hi I think we should bennevisplace for all the reason you outline. I was thinking this myself yesterday when it looked like the news we received today was on the horizon. There is no justification for this financial or moral in my view. So much was voiced about liberty during lockdown. It seems liberty for the immunocompromised doesn’t matter.

An

Annie1920 profile image
Annie1920 in reply to annmcgowan

We the severely immunocompromised are an expensive minority.. Better culled, in the opinion in of this government is my opinion

annmcgowan profile image
annmcgowan in reply to Annie1920

Hi Annie it certainly feels that way. If you work out the costs at £800 twice a year for half a million of us it’s a drop in the ocean in medical terms. We pay our taxes like everyone else and have the same rights as the rest of the population to be protected and have our freedoms and liberty reinstated. What the problem!!! I can’t see it!!!

Take care

Ann

annmcgowan profile image
annmcgowan

It seems that way for the moment Jammin. Jackie post gives some hope 🤞.Ann

Ghounds profile image
Ghounds

The son of a friend of mine, a young fit and healthy man who is fully vaccinated and boosted, is currently very unwell with COVID and has been for over two weeks now. So the argument that COVID is now safe is not true, at least in his experience.

Jetliz profile image
Jetliz in reply to Ghounds

Yes a couple in my village middle age both had a rough time for best part of 2 weeks recently all vaccines had so anyone's guess what other varients may bring!

bennevisplace profile image
bennevisplace in reply to Ghounds

Thanks Ghounds. As implied by your Covid anecdote, it's still a bit of a lottery as to who gets it bad.

In the Omicron era I know of only one of our members having severe symptoms needing hospital treatment, versus quite a few others who sailed through with the help of antivirals or monoclonals.

For the time being this generally mild Omicron BA.5 seems secure in top spot in the UK at least. It excels in two key areas: transmissibility and immune escape, and it's not likely to be displaced by the new subvariant BA.2.75 originalText

bennevisplace profile image
bennevisplace

Hoping to avoid jail and the park bench.

Poodle2 profile image
Poodle2

What is currently available, is it just Paxlovid? Or do we still have some infusions available in the UK?

bennevisplace profile image
bennevisplace in reply to Poodle2

Pax, Rem, Sot, Mol healthunlocked.com/redirect...

Poodle2 profile image
Poodle2 in reply to bennevisplace

RZ8983DV please check bennevisplace link and previous posts, you are eligible.

Annie1920 profile image
Annie1920 in reply to Poodle2

Both are available but whether you get it is dependant on how severe (it has to be judged moderate, what ever that means) your disease is within the first 5 days. This judgement is made over the phone often by a medic of unknown qualification working from a tick sheet.So even if you are severely immunocompromised there is no guarantee you will actually get any antibody treatment in the uk

bennevisplace profile image
bennevisplace in reply to Annie1920

Indeed. That's why we need the clinical commissioning guidelines by our side when we are having that discussion. Then at least it's a level playing field and you can't be fobbed off with a spurious excuse not to treat.

Michaeljohn50 profile image
Michaeljohn50

Good morning; awful news. There is a very active campaigning group on FB; "Evusheld for the UK" who are engaging the powers that be, twitter storming etc. I have joined to add my voice and express solidarity. I suggest that it might be worth a look. I feel the need to do something and it might just help reduce current levels of frustration, feelings of helplessness and disbelief.Equality of covid protection!

Michael

G1llHa1n profile image
G1llHa1n

'Like' does not apply but again thank you for keeping us up to date about this government dereliction of duty of care for all immuno-suppressed and doubtless others too.

Mal42 profile image
Mal42

what to do? I guess this does need a campaign highlighting our plight. Blood cancers are not understood by the general public, I find it quite hard to understand them myself. Is blood Cancer uk doing anything. I just looked on their site and searched Evushield and it came up with nothing. We need to increase awareness of this neglectful treatment of us.

Mal

mrsjsmith profile image
mrsjsmith in reply to Mal42

I believe all the blood cancers have been campaigning, but personally I find the blood cancer website difficult to search.

Colette

You may also like...

Evusheld in the UK

cancelling upcoming Evusheld appointments.\\" \\"Just got Evusheld today... but rumor has it this...

Availability of Evusheld in UK

Hi given that Evusheld has been approved by the MHRA but not yet by NICE is it possible to obtain...

Evusheld for the UK

everyone I suspect most people are now aware that Evusheld is being offered privately in the U.K, I...

USA government Approves Evusheld but UK still waiting

this but would be better off under US system -...

I wonder if anybody got Evusheld in the UK.

in providing Evusheld to vulnerable patients like myself. I wonder if anybody got Evusheld anywhere...