Hi everyone I suspect most people are now aware that Evusheld is being offered privately in the U.K, I was just wondering what people’s thoughts were about this?
Personally I feel it’s shameful how our government have treat the immunocompromised and wondered how others felt about this? I was also wondering about how people feel about it being offered privately?
Ann
I personally wouldn't pay for it on the principle .
I've changed tack based on the fact that it's chasing something that after fighting for isn't likely going to happen anytime soon . I decided to try and move forward mix more and use a mask when in a crowded situation only. I did go to an outdoor agriculture show without a mask and promptly got an infection I didn't shake off for 2 weeks so dropped my guard possibly too much it's hard making choices but feel it's time to try and move on for me personally. I've read on our forum so many different opinions and can understand them all its so frustrating.
Thank you for your reply I know exactly what you mean. Balancing freedom with safety is not easy especially in a climate where most people behave as if the pandemic is over. I have decided twice to ditch the mask only to go back again.
It’s clear to me now the battle with the government for Evusheld is very unlikely to be won this autumn/winter, despite the hard work our supporters have put into it. Maybe next year who knows!!!
I have looked into costs privately and discovered Astra Zeneca are offering it at the reduced rate of £1,000 plus VAT and procurement and provision costs. The fact we may have to pay VAT for a drug that should be provided on the NHS makes my blood boil. Taxing us adds insult to injury!!!
On a more positive note allowing it to be sold privately and taxing us for the pleasure could be used in favour of provision on the NHS. How can this government one one hand argue the case against NHS provision in terms of questionable efficacy and in the other allow it to be distributed privately? Does efficacy improve if we pay for it ourselves!!!
On the subject of the inequality of paying privately don’t get me started. Not everyone can afford it and if we have to access it through our own pockets over a number of years it’s unlikely many more of us will manage this.
Just putting these arguments out there to see how others feel. Hopefully some more knowledgeable than myself will know the answer?
Ever hopeful
Ann
you’ve made a valid point here, will we be expected to pay over a number of years, or possibly the rest of our lives to get access to Evusheld or similar. My concern is the efficacy of the drug against the new variants that are already on the radar and of course will continue to mutate over a period of time. I think I would be prepared to take a chance and pay for the first dose and hope I get some protection but going forward I would need something more reassuring before I auction a kidney to pay for it. (Only kidding, please don’t take offence!!)
It is all very confusing from my perspective. I have made no decisions yet and feel unsure and insecure about going down the private route for all of the reasons everyone has cited in response to my post and more.
I know my haematologist agrees with Evusheld for us on the NHS and will need to seek his advice. If he advises to go ahead based on some protection is better than none, I have no antibodies post 6 vaccines, I wouldn’t want this to harm our fight for it in the NHS for us all. I certainly wouldn’t want or be able or willing to self fund for life.
Ann
How do you know that you have no antibodies? Thank you.
My haematologist had me tested to my surprise as he didn’t really believe in this. He said as I had not had covid he thought I must have some, I did not. It’s difficult to obtain antibodies when on Ibrutinib like me.
Ann
Anne, I know from your previous posts how important this is to you, the principle and the actuality. Like you I've been very actively interested; I even tried, unsuccessfully of course, to get it privately in France early summer, but now I think it's all too late.
It was never going to dramatically affect my extremely cautious lifestyle, just provide a little mental security, but now with the likelihood of new variants against which it may be less effective or even ineffective, I wonder what is the point.
Others here have expressed similar or other reasons for not getting Evusheld, all very valid. No-one it seems is proposing to go down the private route.
Stay safe,
Roger
Hi I agree it is all too little too late for us all. We should have had this last year. Now new variants make it questionable. It’s all a big mess and we are left to pick up the pieces.
Ann
I am lucky enough to be able to afford a private dose but won't go that route for a number of reasons.
1.The principle. As has a already been said, if it's safe enough to sell it should be available to all who need it.
2. Private health care is a sticky route to embark on. There are always "added charges" and if you are dependent on this the costs add up. The £1000 quoted is the baseline.
3. There are too many possible things that might go wrong with a new treatment like this, depending on other conditions you might have. I had a heart attack and I'm type 1 diabetic. Step inside the private health bubble and everything the NHS does for you is negotiated differently.
4. Committing to a paid for drug you'll need every 6 months for the rest of your life and which could easily increase in price seems unsafe to me.
We need to continue to support the NHS even though our government seems determined to starve it out of our lives.
Hi the points you make are all of things going round and round in my head which is the reason I posted.
Ann
I enjoyed your post, Harvist, and most of what you say is right, in my opinion. Except for your last paragraph on the NHS, which appears to be in 'Meltdown' due to Covid and other factors.
One of those, being the 'Grose Mismanagement', of their 'Finances, and, their, Obsession with costly, 'Diversity Programs' over the past 30 years or so.
Their constant cry for more money is not the answer, as it seems to me that the more they get, the worse the service. They badly need a 'Deep Clean', which is unlikely to happen, with the Chaotic Group of Parliamentarians of all colours, which we have at the moment.
Sorry to get (A little Political) I know we try to avoid that on this 'Website', but it has to be said I think.
All the best. Ron.
I commented on this a week or so ago after also being offered it privately for £1750. I turned it down. Insurance companies won’t pay (which is not my issue) but I could afford a single shot. Every six months … no. For me, taking my own situation/health/lifestyle into consideration, I don’t feel the need to pay for this. It doesn’t even give you guaranteed protection. Above all, it is wrong. I have private healthcare as a work benefit, but I just can’t get my head around this one.
Hi I read your post which set off my investigations and this post. I agree the private route is daunting and unjust and sets the premise for treatment for those who can afford it and none for those who can’t. I am in total opposition to this.
My strong moral conscience and my own personal needs are clearly in conflict with each other. Adding the question of long term private funding risks and questions regarding efficacy to new variants it doesn’t look like my personal needs will win out.
Ann
it’s only useful if you can’t create antibodies. It’s also super expensive, so the NHS has to make a call on cost vs benefit. Remember we get access to covid antivirals etc…
To me it's clear. AZ have had a poortake up of Evusheld in the US, with less that 20000k doses thus revenues Low. Add this coupled with the fact that it is not effective against some of the some of the new variants, then AZ need to shift stock before they have to destroy it. I am sure a new PreP will be found in the months to come for MHRA and NICE to review. I can never see a PrEP been widely available to the immunocompromised population via the NHS, I suspect that NICE will recommend a narrow use to the must serious ill.
I think you have a valid point but I'm trying hard not to get a chip on my shoulder when cost comes into play. Without singling out any one health issue in particular I find it frustrating that there are many medications and operations available for self inflicted or bad lifestyle choices and yet we have this without either. I don't ever want to play a victim but working all your life and then price or certain criteria is mentioned seems an injustice but I'm trying hard to just accept it and therefore do understand your theory
Hi I understand your perspective and we are here through no fault of our own. Like you I try not to think about these things.
Ann
Also I can see the cost /benefit not been proven my mass use of Evusheld to 500k people. With appointments / admin and the drug it will be say £1000 per patient, say 2 doses per annum then that adds up to 1 bn PA. What I can see is PreP been made available for transplant patients, those on immunosurpressants and ? Those with no antibodies with other comorbidities. I cam see the cost/benifit possibly working for that cohort. Remember under a cist benefit model does not consider those shielding just hospitalisation and length of stay.
Hi sorry I didn’t quite understand your reply. Are you saying it will be more costly to give us Evusheld than the costs of us being hospitalised? It also seems your thinking it will be difficult to administer, needs to be prioritised and will not being it all?
Ann
To roll out Evusheld to 500k people is far more costly then the hospitalisation cost by far. That's why a more focused cohort of those at the highest risk will probably be the recommendation. To put it in context the USA has 6 times our population and has only treated 17000 people which would be the same as treating 3500 people in the UK.
Thanks Steve I thought this was the case, not everyone would receive Evusheld only those like myself with no antibodies. The research suggests on Ibrutinib I am unlikely to make any antibodies. Testing for myself has shown I have none after 6 vaccines.
Kind regards
Ann
i was on Ibrutnib after my O+I cycles for my stage 4 CLL diagnosis in Nov2020 , I didn't make any antibodies until my 3rd Jab and 2 nd Covid infection. I moved to acalabrutinib just before remission in July 2021. I have had a further 3 jabs and another Covid infection. I haven't checked antibodies for a while but will probably order some more home LF tests before Xmas.
Hi Steve sorry to hear you have had vivid in 3 occasions. How bad did you get it? Have you had any long term effects?
I am in the flair trial and won’t come off Ibrutinib until March 24, another 18 months. I have not had covid.
Ann
alpha and omicron were OK like an 10 hangover, I was taken to hospital with delta as a precaution because my platlets dropped so PE concern. SATS never dropped below 96
Hopefully you don’t get it again.
Ann
i doubt that as it's all over the school and nursery... resigned to further infection
OMG 😱you are surrounded by it, poor soul. Let’s hope you are lucky and don’t succumb.
Good luck
Ann
I have been taking Ibrutinib for 8 years now, I didn’t make antibodies until I had my third vaccination when they were measured at greater than 2500. They have stayed around that level until my latest 6th dose when they are 1600, I would still have evusheld if it was offered on the Nhs to me.
Wow, well done, that’s amazing. I would love that and like you would have Evulsheld on the NHS if offered.
Ann
I have had 6 vaccines too. I would need to pay for an immunity test privately. I wasnt sure if I wanted to know. I assume I wont have made any antibodies and have not bothered. I dont mind paying but it wont stop me getting covid I imagine. I need ivig and have to hope that helps until scientists come up with something. I am careful but I dont lock myself away. Like you I am sick of this, Anne uk
it’s 5k a dose! You need two! Go figure why the NHS decided against it.
My haematologist said privately it’s being offered at £1000 per dose plus vat etc. However, I take your point. Money was the issue last year with maybe efficacy issues this year with new variants. It’s a disgrace how we have been treat we could have had a years respite like the rest of those in evusheld. Watch this space for next year.
Ann
even at £1000 per dose its over a Billion quid. I believe that why NiCe we asked to review to look at a more targeted cohort that would be cost effective. Clearly 2 doses per annum to 500k individuals is not good health economics.
Hi Steve thanks for clarifying that for me. I agree it’s always about money.
Ann
Hi unfortunately you are possibly right about excess supplies being sold off to us!!! Another reason to add to the No list.
Ann
Part of that is the US completely botched the rollout, and then when attention was called to that, they promptly buried the evidence, making distribution even more haphazard.
if you feel like getting aggravated about something today, here’s the link: cnn.com/2022/03/24/health/e...
I have the US health system well wired up and very good private insurance and it still was an ordeal to actually get Evusheld here. I am appreciative of the protection, but I believe the current concerns about efficacy against new COVID variants make clear that this is a stopgap solution.
I’m more focused these days on balancing social and emotional life with reasonable risk precautions. Damned if I’m going to be a shut-in, but also can’t be footloose and fancy-free with young kids still in the house.
Sorry to hear that. We have cover ups here too. We should have had it last year at least we would have had some respite. They are using the new variants of this year to cover their tracks.
Take care
Ann
At 58, I am footloose and fancy free .... well a full time dad to my 5 and 3 Yr
That’s a handful Steve. You need to stay safe for them too.
Take care
Ann
you
My husbands employers used to give all employees and their families health insurance, but they no longer do. I was NHS from the start of the cancer - the insurance stopped 2 days after I was diagnosed. But I am a patient at the Christie for my CLL, (NHS) and they are awesome. I come across "you need this medication but you need to pay for it" with 2 medication. The first is vitamin D supplements. I have an anaphylactic response to to oily fish, seafood and some white fish - blue light job. And when I was diagnosed (very) Vitamin D deficient I had to go and sit in A&E when I took the initial loading dose. However, there was a problem when I went on daily dose. I need vegan tablets, because of the allergy and NHS wouldn't fund it because they said "vegan is a life style choice." BUT as my pharmacist, my GP and myself tried to explain, they wouldn't fund it. So I buy it - it isn't very expensive.
I was involved in an accident which caused complex pain - about 25 years ago now. The pain management team talked fully around suitable treatments etc for long term pain - it will be lifelong now. They hinted at a drug that some people use, but not on NHS; I chose not to buy it, as it is illegal, and not to grow it because of the smell. So I take other medication, prescribed by pain management doctor, which work BUT are not what I would take for choice. Then a couple of years ago, it became available in UK for pain management, in a tablet form, but only privately. Typically £800.00 a month, which isn't acceptable or affordable to me.
This is a disgraceful situation and I am very upset about it all. But I am also powerless!
Liz in UK
Hi Liz sorry to hear you have had such a difficult time. Clearly you have faced this situation before sorry to hear you are facing it again and feel powerless. You’re right this situation is unjust and unfair which is why I write this post. If nothing else we have this website and each other to call on when we need to.
Take care
Ann
thanks Ann - I am used to the pain stuff now, and my GP knows that if Sativex becomes available on NHS I will want a referral. Even if I could afford that £800 I wouldn't sleep at night knowing the money could have helped people who have no home, and no food and no heating.
I really appreciate this website, and the Facebook CLL group.
Take care
Liz in UK x
You’re right Liz it helps to think about others who are in more difficulties than ourselves.
Ann
I'm in the U.S., and miraculously got it for free. But it some me months of practically begging.
Receiving it was more involved than getting other vaccines. I had to get it in a hospital setting, and they did a complete blood panel before clearing me for it. Then after the actual shots (two) I had to sit around for an hour before going home. With the long drive involved it took the better part of the day. But I'm glad I did it.
I don't really think I could afford it at the costs being reported in the U.K. Here it costs me about $9,000 annually to have cancer, taking into account the premiums and $4,250 deductible. I'm tapped out.
Hi thanks for your reply. It’s sad to hear you practically had to beg but good you got it. Hope it helps prevent you getting Covid.
Good luck
Ann
Making vulnerable people pay for medication is obscene though of course our friends in the USA are wearily familiar with it. However, I believe there is a question mark over whether Evusheld is effective against the variants now circulating, particularly the newest hyper-transmissible ones. So is it worth the money?
On a brighter note, at least some studies are suggesting that immunosuppressed/compromised patients, including us, benefit from additional shots/boosters. healio.com/news/hematology-...
Hi I agree but that’s where we are right now. The new variants make me question is it worth buying right now, alongside all of the practical and moral reasons not too of course. We should have had it last year at least we would have had some respite . Too late now.
Take care
Ann
Great Post, Ann, and helpful to many, I suspect. Ron.
Interesting post Ann and something I have thought about over the past couple of days, mainly because I am so bored being worried and restricting where I go and who I see. Hospital appointments have become the highlights in my diary, definitely something wrong there.
Hard to believe I thought this would all be over in 3 months, how naïve I am.
Colette 🤞
Hi Collette that’s why I am considering the pros and cons. The restrictions and hyper vigilance are impacting me now.
Take care
Ann
I know the feeling about hospital appointments being the highlight. They know my name! I wont have evusheld because I dont trust it. People still catch covid and there are new variants. I am still going out but with care. Anne uk
Yes Ann,
All the nurses in the haematology day ward know me by my first name, which is nice in some ways, but depressing in others.
Colette
Hi Collette I still do telephone consultations so have been spared the pleasure and pain.
Take care
Ann
Hi I suspect there may be no choice with the new variants on the horizon Anne.
Take care
Ann
Hello annmcgowan
I understand your anguish about Evusheld and NHS approval. I live in USA so do not have dog in this fight.
Just about all of the nationalized healthcare systems are bankrupt after dealing with covid, this also includes USA.
I am undergoing my second round of treatments for CLL and to date has cost over one million dollars US. Considering that none of these treatments are going to cure me of my illness, many would consider it a waste of money. I partially cover some of the expense by paying for my health insurance, but most of the cost is shouldered by other people's insurance premiums. The cost of CLL treatment in US runs into the billions of dollars US and that is only a small part of the health care needs of USA.
We complain about the high cost of CLL drugs, but the reality is those drugs would not exist were it not for the profit motive.
There are many health care items one would like to have done at no cost like antibody testing, but the testing does nothing to cure your illness other than you would like to know. Someone will have to do without to pay for antibody testing.
We are indeed all in the same boat, blessings.
Thank you for your reply it helps to hear others positions and points of view, that’s why I posted. Blessings to you too.
Ann
Hi Ann, sorry to hear your government hasn’t offered it to those in need. I am Canadian and fortunately was not charged for Evusheld due to my CLL immune compromised, p17 del.
The Evusheld injection was July 13. I was up to date with 4 vaccines and went to Ireland Sept 4 for a week and contracted Covid. I was given paxlovid. The biggest concern for me with Covid was chest congestion for a week but Tylenol and Advil combined with everything else I had … I got through it and am fine now.
I was told evulshied MIGHT prevent me from getting Covid and/or reduce the need for hospitalization. I’m just happy it all worked out and hope that Evulsheld played a part.
Good luck Ann.
Thank you for your reply. Glad you can get Evulsheld free of charge and that it has helped you get through Covid without hospitalisation. I suspect we won’t get it here soon given the new variants it may be resistant too!! The government will use this as an excuse to cover themselves for not providing it last year and possibly years to come 🥲.
Good luck to you
Ann
Hi Ann,
Thanks for this post. Like you, I’m on the Flair Trial here in the UK, taking Ibrutinib and venetoclax and like you have no antibodies after 6 jabs. (They test for antibodies as part of my check up every 3 months.) Last week I contacted my CLL specialist who said that I “would probably benefit” from Evusheld. However, ethical arguments aside, I have reservations after reading that it is not effective against the variants now circulating . At the same time the thought of another winter spent shielding is too grim to contemplate. It’s so hard to know what to do for the best. Like the vaccines, will Evusheld evolve to keep us with Covid mutations?
Hi I understand you dilemma, I feel the same. I was thinking some protection is better than none but not sure now. I will have to talk it through with my haematologist next time we speak.
Good luck to you
Ann
It's not offered at all in BC Canada as their is no efficacy for it. bccdc.ca/Health-Professiona...
Hi thank you for this information. It sounds very much like what we have here in the U.K. it’s very confusing when other countries have approved and distributed it. Who do we believe??
My haematologist approves of it but does not provide it privately. I will talk it over with him but it very much looks like it’s no longer appropriate given the new variants.
Take care
Ann
Hi Ann - we live in France, and my OH is followed for his CLL at the Oncopole, a specialist cancer hospital in Toulouse.
Just to let you know - they are still very much on the fence here about the efficacy and usefulness of Evusheld. Yes, in theory, it has been cleared for use - but there are just too many variables for them to roll out a scheme of vaccination. As in the UK, they are equally worried about this winter's possible flu epidemic, as well as the possible changes in the various viruses.
Nick contracted Covid in April 2020 and, to put it simply, nearly died. He spent 2 months in ICU, with the first 2 weeks in an induced coma, then 4 months in residential rehab. Fortunately, he was very fit at the time (he was a ski instructor) and he has come through, but not without serious life-changing effects.
However, since then, the vaccines have been developed, the antibody treatments have been instigated so, in the big picture, our feeling is that it's better to live with the options readily available at the moment, without a radical big spend on something with quite possibly limited usefulness.
Hi thank you so much for your reply. I am sorry to hear Nick had such a bad time with Covid and is still having after effects. I hope he recovers to full fitness ASAP.
I am sorry to hear in France they are also struggling with efficacy issues over evusheld. My understanding had been that Europe was being provided when the U.K. were not. The injustice of this lead to my post.
It looks like future use if evusheld may not VE the way ahead for the immunocompromised. Let’s hope something better comes along or Covid burns itself out 🤞.
Kind regards
Ann
Thanks Ann - we've had to accept that he won't return to full fitness, which has been very tough, especially for him. But we're doing the best we can to make the most of life - my feeling is, if you can manage it, try not to sweat too much over this. Carpe Diem x
Hi sorry to hear full fitness is out. I agree and admire your very positive attitude.
Good luck to you both
Ann
I wonder if anybody got Evusheld in the UK.
CLL Disclosure? (UK).
Evusheld reaction
