I emailed my MP this evening regarding the Evushekd situation, this is the repsonse I got:
Thanks
Alas, clinical decisions are not made by politicians. The whole point of NICE is an independent analysis of the cost effectiveness of treatments, free from political interference.
Sir Desmand Swayne
I am left flabbergasted and totally usupported. Guess I have to remain under virtual house arrest until NICE make up their mind!
That is a very unhelpful reply.
We are not worth the money??
I certainly think we are!
I don’t know too much about Eversheld at the moment. Are there any downsides to taking it? Thanks
Yes, many people have written to their MP and received a pretty standard reply. I believe the Department of Health has decided that there are sufficient existing methods to protect from or help cure Covid. Now we’re waiting on NICE.
Hi thank you for your post. This is the role of NICE. I would like them to explain why it is not cost effective and answer the question of why prevention is not better than cure given the implications for long COVID, depression and many other costs our community and others will be bringing to the NHS. Very short sighted in my view.It does feel like we are not worth the money and the implications of this decision for the immunosuppressed.
You are lucky your MP got back to you mine did not and I started writing to her in January when this remained a political issue.
It remains a political problem in my opinion as long as we remain without evusheld we should not stop trying.
This decision infringes on our liberty as well as our physical and mental health as well as the remainder of society given the potential for the immunosuppressed to develop new strains of covid.
Ann
Hi Ann. I wrote to my MP in April and heard nothing! Was so upset with news about Evusheld late last week so started firing off emails to him again. He finally responded yesterday. I have also emailed him the article published in todays MailOnline Sunday.
Hi I haven’t seen that post I will check it out. I have telephoned my MP to complain about her lack of response and left a message for her. I will be following it up so the article may be useful, thank you. I know the CLL Society are still fighting our corner and we need this and more. There has been nothing on TV which appalls me. NICE should be treating this as part of our countries response to the pandemic in my view not part of their normal procedures and recommendations. Covid is not over and we need to be set free.Take care
Ann
I agree with you Ann. My husband and I are ex health care professionals…..he had to give up general practice during the pandemic to protect me from Covid. We feel so bitter at the way blood cancer patients are being neglected while the rest of healthy UK people go about their lives……. Diagnosed Christmas 2019 and started treatment March 2020. We went straight into lockdown and have remained ever since.
I know exactly how you feel. I am also a retired Health Care professional. It’s discrimination against those most vulnerable to the virus. If we don’t get it we are left with the choice of remaining isolated which impacts our mental health even further or risking our lives.Unbelievable!!!
Ann
So true Ann!
Very typical response from the people who are meant to represent us. I had need to approach our local MP during Covid (not health related) and he and his team were a waste of time. I could wander dangerously into politics here and the point of these people, but I’ll end it there!
One more thing to add with regards to Evushield. My (private) doctor told me last month that if NICE didn’t approve the use of it then the private sector were going to sell it anyway given the increasing number of people asking for it. My jaw dropped at the blatant unfairness of that. Private healthcare in the UK is largely about profit, however, and therefore a no brainier for them and the pharmaceutical company.
Clinical decisions are not made by politicians?
For Covid we have the JCVI to advise politicians.
HM government states that the vaccines - rolled out with zero input from NICE - prevented 230,000 hospitalisations
gov.uk/government/news/covi...
Correct me if I'm wrong, but Covid treatments approved by the MHRA have not had to be vetted by NICE either. They are directly funded by government.
I absolutely agree with you. I intend to phone French hospitals tomorrow to see if I can obtain Evusheld there. I cannot remain under virtual house arrest for much longer. None of us who remain shielding can get this time back, and two and a half years is long enough!!!
Please do let us know if you have any luck obtaining it via France. My Dad is 90 and has CLL and he has been shielding for the whole period and it’s just such a terrible quality of life. Thank you
I will let the forum know.
My husband is 83 and I am 72. Even with Evusheld he still wants to strictly shelter. It takes a huge toll on me. I want to live again but can’t for his fears. Many know I survived a cancer diagnosis 2 months ago of another sort and I want to enjoy life again. We need more treatment methods against covid.
Hi I don’t know if you are correct or not but that was my understanding of the process. I think they neither the vaccines or the drugs to treat us if we get COVID needed NICE approval,Ann
Yes. If you look on NICE website, you will find a few bits and pieces of guidance related to vaccines, but NO technical appraisals thereof.
As of lastweek you will now find a pending technology appraisal of tixagevimab-cilgaimab (Evusheld) for preventing Covid19, expected publication date TBC nice.org.uk/guidance/condit... NICE!
Thank you for this very interesting. It reads that Nice are supposed to take the equalities and discriminations acts into account when making decisions. It doesn’t feel like they have in my opinion. I believe the stakeholders are looking to them to justify their decisions?
I take your point, if I am understanding you correctly, that evusheld is being assessed by NICE when other pandemic preventatives and treatment medications were not. That is discriminating and unequal in itself, and clearly a government choice, so back to the MP’s, which seems to be a waste of time right now!!!
Their guidelines are complex like all governing bodies guidelines it will take an expert with legal skills to understand and challenge them successfully in my opinion. I wonder if we have any of those on this forum or even within stake holding groups?
Ann
Ann, believe me, NICE truly represents the long grass. Draft report possibly spring 2023, by which time will known variants still be relevant? Final report if ever? NICE will be doing a technology appraisal equivalent to painting the Forth rail bridge.
It should never have been referred to NICE.
Thank you I agree. I don’t know if anyone on this site has just read the latest breaking news re vaccinations for covid? The U.K. is the first country to approve a vaccine that covers all variants including omicron. These will be offered to us too. In my view this adds insult to injury they do not seem to have understood that we do not respond well to vaccines and in my case and many others on ibrutinib never will given the research evidence. You really couldn’t make this up!!! We really are not worthy!!!Ann
Oh Ann, what can we do? It is truly shocking!
I don’t really know I suspect we will have to turn to the blood charities for help snd advice. I was hoping one of this forums administrators would respond. Jackie did respond to an earlier message saying she had put a case forward to NICE on behalf of the CLL Society who oversee this site which had to be in by 12th August. I don’t suppose she has had a reply yet. I hope someone responds to this it would be helpful.Ann
Hi I was thinking with are half a million people in the same position as us and many different charities/stakeholders involved surely together we should be able do something. I just don’t know what. Ann
Thanks for the heads up. Unsurprisingly, The Joint Committee on Vaccination and Immunisation (JCVI) will advise on how this vaccine should be offered as part of the deployment programme. gov.uk/government/news/firs...
So yet again no NICE involvement!!! It seems to me this government have purposely changed the rules for prevention for those who do not respond well if at all to vaccines. Any ideas where to go from here much appreciated.Ann
Hello Lady_Lymington
This is a very common issue with nationalized health care system. Most countries do not have an elaborate drug oversight agency like the USA Federal Drug Agency and rely instead on FDA recommendations. I do think any country should have an agency to determine if the drugs they are buying are cost effective. If nothing else, it keeps country from being price gouged.
Hi I agree with you their is a role for agencies like NICE but only when it plays fairly and follows it’s own guidelines which in U.K. it doesn’t appear to be doing right now.Ann
Your best bet is to get a reporter to do an article in the paper indicating the lack of and inadequate responses from MPs. As long as the MPs can keep this under the radar they will do that. I used to work for a govt Minister and political pressure which is public gets more action. NICE is I assume similar to the body who makes recommendations to govt in Canada. If so NICE does not approve govt funding politicians do thru your treasury dept. saying NICE decides on the worthiness of govt expenditures is drivel.
My ten cents.
Question are u sure Evusheld is very effective against omicron? I don’t feel safe with out an N95 indoors and even then only for short durations.
Hi there have been articles in the papers on evusheld but I haven’t seen any exposing MP’s re evushekd yet. It’s a good idea. I think we also need TV coverage which hits a wide population. I assume the blood charities would take this up on our behalf, but am not sure? What do others on this forum think?Ann
Is there the possibility of getting these shots at a private practice? Certainly this isn’t ideal but it might be an option for some if the cost isn’t too high.
Best,
Mark
Hi Mark. I don’t believe that Evusheld is available in the UK at all.
Hi I agree Mark despite the fact we shouldn’t have to. So far it doesn’t look like this is an option for us.Ann
I wonder if we created a collective of people who could purchase it, we could then approach AstraZeneca and place an order ourselves. Has anyone contacted Astra about procuring it? A friend of ours in pharma said as it is MHra approved a private haematologist should be able to prescribe it and then all we have to do is order it. Perhaps we could even crowd fund for those who can’t afford it.
Hi Astra Zeneca have been contacted by a member of this forum with no success at this point.Anything is worth a try but we would have to contact consultants as well as Astra Zeneca for advice first. Perhaps the stakeholder charities would be a starting point. We need someone with the clout to lead this process individually would be difficult. Perhaps you could contact someone in our blood charities with your ideas for guidance and advice?Crowd funding is a good idea for those unable to fund it but we really shouldn’t have to be doing this at all in my opinion.
Ann
Article in The "I" newspaper today re: Evusheld - see link apple.news/AnvwErq8DSo-UMaJ...
Hi thank you so much for this article. At least someone in the press is fighting our corner. I wish it would go on TV.Correct me if I am wrong but this article refers to the DOH saying no to Evusheld not NICE where it still has to be evaluated. This makes sense as Jackie, one of our administrators, recently wrote about completing papers for NICE on behalf of the CLL support group that oversees this site, supporting Evusheld for the immunosuppressed. It should still never have got this far as it is part of the covid prevention programme on my view.
It’s interesting to see the costs per person £1,500 pa. for around 200,000 people especially when compared to the costs of other preventative treatments like diabetes and HIV. This puts it into perspective for me snd hopefully it will do for others including those involved in making these decisions.
Take care
Ann
I suspect NICE are looking at the detailed NHS data regarding all the other available treatments on their effectiveness at preventing hospitalisations and complications within our community. Personally, I believe there probably isn’t the clinical need at a population level is give a prophylactic treatment. Just anecdotally from multi CLL groups the other drugs along with the vaccine seem to be doing a fantastic job. I have had Alpha, delta and omicron , only hospitalised due to PE risk due to my platelets.
Undoubtedly this has been the UK government's view for quite some time. For the immunocompromised they have gone the treatment route and blocked the prophylactic route. Most countries have seen it differently and enabled both.
What's unforgivable is the UK government's kremlinesque deviousness in the way it's handled AZD7442/ Evusheld. "Lack of transparency" would be putting it mildly.
Having worked with healthcare systems all over the world, we only one with that has a “fully state funded” system, thus the bar is set higher than those with a hybrid system or an insurance based system. So NICE really have to examine the cost benefit in more detail as it would be fully funded by the tax payer and not part funded or fully funded by the health insurance systems.
Yes, "The whole point of NICE..." per Sir Desmond Dwayne's letter quoted by the OP. Irrelevant.
Because Evusheld should never have been referred to NICE for technology appraisal. It is a Covid medicine, an immunisation equivalent to the vaccines, for which the MHRA gave regulatory approval, the JCVI advised the government on deployment, and the NHS delivered. The process was transparent and was as swift as it could be.
Without prejudice to the outcome, people had a right to expect a similarly transparent process with Evusheld. Instead they got obfuscation, misinformation, delay, and final confirmation of the kick into the long grass: NICE. Nice!
I disagree. We are talking about peoples lives here. The fact that Evusheld is being given in 32 countries was approved here in March , more than 120 clinicians have put their full support behind usand still we are waiting for the roll out. NICE should have nothing to do with it!
Quite.
Hi I understand the need for NICE as you say to look closely at what our NHS purchases. What I do not understand is why it ever went to NICE in the first instance. It is my understanding that none of the other prophylactic vaccines or the drugs procured to treat us for covid have followed this route.I agree with bennevisplace that the government have not been transparent in fact they have been devious and underhand.We pay for our health care through the government, it’s not free of charge to those who pay taxes and national insurance. I don’t understand other health care systems as you do given your experience but surely this means the government is our insurance company and we are self funded not state funded??
Ann
I agree wholeheartedly with you Ann.
Thank you.Ann
Probably there are several reasons why it went to NICE, firstly there are multiple treatments available reducing admissions , vaccine program continues, it’s only a small section of the population affected, NHS financial pressure. I am 90% certain if data showed the Health Economics worked then it would have NICE approval immediately
I think we will just have to agree to differ.
Hi yes this is how NICE would come to the conclusion it has done but this is a covid preventative medication that should never have been sent to NICE in the first place. No other covid medications were.Ann
Yes Steve, there are multiple treatments available now to immunosuppressed people - the same people who are campaigning to get Evusheld but can't, even if they would be prepared to pay for it out of their own pockets - yet none of those multiple treatments were referred to NICE for technical appraisal. Why? Because they are to treat COVID19. And they are all licensed to treat "a small section of the population", so I can't see that your argument flies.
COVID immunisations are matters for the MHRA (tick), the JCVI and potentially the CHM. It has not required NICE to calculate QOLYs per £ spent because it wasn't the NHS footing the bill, and neither would that, should that, be the case with Evusheld.
Health economics may strongly favour the treatment of the immunosuppressed rather than prophylaxis, and I suspect they do. If so, why is the UK the only G7 country to have excluded Evusheld? And why has the government played such a cloak and dagger game with its commissioning, or rather its burial? Is it really all about money?
Let us see the JCVI's assessment (obviously that doesn't exist).
Let us see the economic assessment (does that exist? It has not been published). It doesn't need NICE to
Has the oft-mentioned HSA study of Evusheld's efficacy against Omicron made any progress? (does such a study even exist - there is no evidence of it on the UKHSA website).
I'm sorry but I don't see the referral of Evusheld to NICE as an example of DOH responsibilty. It seems more like the latest move in a protracted government subterfuge.
Well put!!!
Whilst I am delighted that you have recovered from 3 bouts of Covid, sadly there are more than 500 people with blood cancer have succumbed to Covid since March of this year!
I know it’s a complex subject , but the first question I would ask about the 500 figure is “from” or “with” covid, secondly what is the excess death figure from say 2019. I know it’s an emotional subject, but with 40 yrs in pathology and immunology that is primarily state funded, Data drives everything when it comes to the cost /benefit analysis of drugs and treatments
Hi as far as I am aware it isn’t. The government were supposed to be keeping the stocks they procured for themselves. I have since read that Astra Zeneca have said the government no longer require these stocks.Ann
Hi. Have spoken to Calais hospital……they will not help. I cannot believe this government. Am getting angrier by the day. We have enough on plates without having to fight for Evusheld. Am going to phone AZ!
Let us know what their reply is please.Ann
Hi Ann. The person could only confirm what I already know. However, she did say that she would make further enquiries and get back to me. Now on the phone to NICE……..have been on hold for 12 mins!!!!
Thank you so much for this.Ann
I have been emailing AZ for some time and they just respond with "they are in negotations". They were saying that even though publicly AZ was saying they have had no conversations with the UK government about Evusheld.
The reality we have to face is that we as a group have just been dumped by the government and with no-one in charge this isn't going to get sorted any time soon.
Even so, we have to keep campaigning.
It is nothing short of discrimination Eucalyptus and I don’t know what we can do to make any difference to be honest, except protest outside of NICE offices in London?
It is discrimination as per The Equalities Act. Could be difficult to prove outside of a court case. The Evusheld for UK are doing a great job for all of us and we just need to support them. They are well connected to people who know a lot more than we do.
I have had to learn to Tweet to support the campaign. Tweeting seems to be the way forward!!!!! That and writing to all Tory MPs.
😅
I’ve struggled to see how this could fit the discrimination criteria as outlined in the Equality Act Eucalyptus because failure to provide Evusheld is widespread and not confined to the disabled. However, the same need does not exist universally and in terms of ‘reasonable adjustments’, the Govt are failing to address this more unique special need for the immunocompromised. After all, the original, neutral sense of discrimination, "the act of distinguishing," came into English by the early 17th century.
The clinical decision making processes are all powerful it seems and politicians are heavily guided. Most I’ve heard are simply not convinced that Evusheld has been proven to be clinically effective enough to justify opening the over stretched public purse. It’s a hard argument to overturn and I share your frustrations.
Newdawn
Hi Newdawn. It fits the Equalities Act because anyone with cancer is defined as disabled. They are quite happy to bring in yet another new vaccine but the Covid
C -Rapid group have not looked at Evusheld. You can check their websites to see what they are looking at. I know from my own CNS that clinicians were asking questions about Omicron efficiacy and Evusheld as far back as January this year. It would appear that even though MHRA approved it provisionally in March, those questions were not answered even though world data started to emerge on dosage related efficiacy but the Uk preferred to run its own trials.
The NHS's NIHR are starting dosage trials in September and I guess that will be fed into NICE but not in a timely manner for us this winter. The reality is we are stuck for yet another winter in lockdown.
Yes I understand and appreciate the points you are making Eucalyptus but I do think the equality card is hard to apply unless it can be proven that others are receiving something we are being denied as people who are classified as disabled. As I understand it, Evusheld is universally unavailable at the moment.
There are some profound ethical issues at play however and many have been left feeling pretty abandoned and almost subject to ‘selective culling’. In terms of health care allocation in the U.K., this has always been the case because they can prioritise where money is being spent. It’s a cruel selection process but the reality of the present system. (It’s the reason I cannot now receive IVIG.) We do need pressure groups like the Blood Cancer charities to keep challenging these decisions. Stock and dismissive replies to our individual letters only add to the sense of injustice 😡
Keep well,
Newdawn
Totally agree it would be a hard one to apply but to take a whole group from society and deny them access to a drug for a pandemic not of their making is a bitter pill to swallow. It hasn't stopped me from mentioning it to my MP though! Hollow words from our PM who said they must look after the most vulnerable in society (but he didn't mean us it seems). The system doesn't even allow us to purchase Evusheld privately so all round we are being indirectly discriminated against.
Like you, I have been denied IVIG on the basis of cost effectiveness. Apparently, I have to almost die from a chest infection before they will let me have it despite having barely no measurable Ig levels. (letter just arrived today.)
I am beyond angry today
😡
Eucalyptus I am so sorry for you and absolutely agree with everything that you have posted.I find it incredulous that we are all due a 6th dose of a Covid vaccination that will do very little or nothing to protect us. I CANNOT face a another winter under house arrest!!!!!
Evusheld for the UK are asking everyone who has a Tory MP to send them a letter this month about the decision not to offer Evusheld for the immunosuppressed. They have put a lot of work into this campaign and the letters can be found either on Facebook page or on their website. getevusheld.co.ukThere is a patients letter template and one for friends and family to send to their MP.
Sadly we are well passed signing a petition now. Useful but targeting Tory MPs is their strategy.
Hi Eucalyptus. Many thanks for that. Have just joined Facebook( having vowed never to sign up with social media) Let’s unite and get this drug that we so deserve!!!!
Further food for thought from ITV News - itv.com/news/2022-08-16/evu... the British Medical Jurnal - bmj.com/content/378/bmj.o2021
Can we use the garden?
I haven't seen my doctor for a year... I just get a Physician's Assistant. 
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Petition against NHS England and use of Ibrutinib 
