Are people with CLL and on watch and wait receiving a third vaccine in the UK in September?

[g684]

Government website implies that it is for people under treatment and/or under follow-up. I am unclear if watch and wait is counted as "under follow-up".

[Fowey2009]

My husband had his appointment with his consultant this week who said that despite the announcement they are still working out the details eg whether it is delivered in general practice or hospital setting etc.

[CguLLer in reply to Fowey2009]

Beryl I assume this was still at EDGH? I recall you saying you are moving at some point. It’s good to know that they are working on it. David

[Fowey2009 in reply to CguLLer]

Yes. We are moving to Bexhill so will stay at ESHT. Pleased because we have a lot of faith in Dr Newman.

[Kwenda in reply to Fowey2009]

My consultant on Thursday said he would write to my GP and tell him to go ahead with a third booster vaccination. Since I have had two Astrazeneca he recommended the Pfizer for the third booster vaccination, since Moderna is not yet agreed by the UK medicines regulator as a booster vaccine.

This action in advance of any general notification for booster vaccinations, since I have an impending operation for an SCC.

Dick

[mrsjsmith in reply to Kwenda]

Hi Dick,

Just checked and Moderna has been approved for use in the U.K.

Colette

[Kwenda in reply to mrsjsmith]

Agreed, it has been accepted for use in the UK, but was NOT listed as a booster vaccine.!!

WHY..??

I copy my notes and references below:-

The UK medicines regulator has approved the use of Pfizer and AstraZeneca as Covid booster vaccines, paving the way for a rollout ahead of the winter.

The JCVI has said a third dose should be offered to people with severely weakened immune systems.

bbc.co.uk/news/health-58499863

People over the age of 12 with severely weakened immune systems should have a third vaccine dose to top up protection against Covid-19, experts say.

About 400,000 to 500,000 in the UK are eligible and will be contacted soon.

They include those with blood cancer, advanced HIV and recent organ or stem-cell transplants.

bbc.co.uk/news/health-58407643

The Medicines and Healthcare products Regulatory Agency (MHRA) said on Thursday that the Pfizer/BioNTech and Oxford/AstraZeneca jabs are safe to use as boosters,

The JCVI has already said a third dose should be offered to people with severely weakened immune systems.

medscape.com/viewarticle/95...

medscape.com/viewarticle/95...

medscape.com/viewarticle/95...

Dick

[mrsjsmith in reply to Kwenda]

Thanks Dick,it’s giving me a headache. Now I don’t remember where but I know I saw Pfizer or Moderna would be offered. I will just wait and see what I get and wondering if I will get a letter in the post soon. My poor GP is totally bemused by the information.

Colette

PS this is from GOV.U.K. ‘ adults 18 or older, either Moderna or Pfizer vaccines be administered for the third dose ‘

[Belfastbees]

There was some discussion about this at the time it was in the news, about a week ago. A definition was offered up which suggests it may not include w+w:

"follow-up [fol´o up]

some further action taken after a procedure is finished, such as contact by a health care agency days or weeks after a patient has undergone treatment."

Its hard to see logic here, whilst it seems w+w is less risk than CLLers under (some) treatment there is still a heightened risk.

A lot of discussion around waning vaccines but the jury's out on whether boosters generally will be offered (to older general population maybe).

[CguLLer in reply to Belfastbees]

Let’s hope our consultants don’t think to much about this and just put anyone with CLL in the third jab pool! I can see there being many posts on this in the coming weeks as some on W&W report being called and others not hearing anything. It’s a shame they could not have written it a bit clearer as even amongst the professionals it is open to interpretation.

[Annie1920 in reply to CguLLer]

My consultant definitely considers w&w to be under treatment and explained it thus: she was seeing me at regular intervals and that was part of my tratment ..my gp did not consider that to be treatment and as the triage for ecv was done intially by gp I had to wait for consultantant to put me on ecv list !!

[Belfastbees in reply to Annie1920]

There does seem to be a disconnect between the hospitals and the GPs. When it came to the initial vaccines a GP told me I wasn't going to be done with the CEV group as I hadn't had any treatment. Very bizarrely she rang back the next day to say that 'they had decided to put me in that group'. I assumed at the time there had been a discussion, perhaps in passing, with another Dr and she had been put right.

[Annie1920 in reply to Belfastbees]

Just had a visit from a friend who's over 80 UK his booster and flu jabs are being offered by his gp surgery next week he doesn't have any underlying problems

[Belfastbees in reply to Annie1920]

Hmm, good for them but I didn't think it was agreed in the UK for any one right now. Great the GP, maybe, is being proactive but seems a bit odd.

[Annie1920 in reply to Belfastbees]

He said the letter was from Test and Trace and they were using the gp facilities... He is old but he certainly has all his ducks in a row.. This is for a booster jab not the third in the 1st cycle that it was recommended we have .. I think its going to be a post code lottery.. Yet again sadly

[Belfastbees in reply to Annie1920]

Ah OK, still I didn't think there had been a move to administer either. Good for him though.

[bennevisplace]

By the letter of the JCVI recommendations it would seem that they are excluding CLL patients on W&W and in long remission. They reference several studies.

How this plays out in practice who knows. Perhaps individual GP surgeries will apply looser criteria, if supplies of vaccine permit.

[Indoorbowlers]

I asked the same question of Blood Cancer UK and they said it had been further clarified to include W&W. They said letters would be received in next 2/3 weeks - so I’m watching the doormat for my husband’s letter 🤞

[CguLLer in reply to Indoorbowlers]

That is great information, thanks for posting it. Hopefully that clarification has been properly communicated to all consultants and GPs. I think we will all be waiting out for the postman over the next few weeks! David

[Indoorbowlers in reply to CguLLer]

I’ve pasted the relevant section from their website, so I don’t miscommunicate it!

Who can get the third dose?It's our understanding that this includes people who had weakened immune systems at the time of their first or second vaccination, because:

* they were having treatment for blood cancer, or were in remission after having treatment in the previous 12 months

* they had either an allogeneic or autologous stem cell transplant in the previous 24 months

* they had a stem cell transplant more than 24 months before, but had ongoing immunity issues

* they were on watch and wait (active monitoring) for any type of blood cancer.

We've been assured that there is room for clinical judgement on who gets the third vaccination. So groups that aren't specifically mentioned in the guidance but are considered to be at high risk can get a third dose. This means people who were in remission for longer than 12 months when they had their previous vaccinations will be eligible if their GP or hospital team recommend it.

[g684 in reply to Indoorbowlers]

Thank you for this. Would you be so kind as to post the website link as well?I find pointing my GP to specific official websites has proved to be helpful.

[Indoorbowlers in reply to g684]

bloodcancer.org.uk/

I think it was under ‘News & Blog’

[g684 in reply to Indoorbowlers]

Thank you.

Here is the full link:

bloodcancer.org.uk/support-...

[Inklinggirl in reply to Indoorbowlers]

Hi, I contacted Blood Cancer UK and they sent me the same reply. I do think that it is all VERY woolly about how this will be delivered as this is a subset of the CEV group and how is it being flagged? My GP surgery reception has said they have 'nothing to do with covid vaccines' and that I can't discuss this with the GP...! I tried to explain that it is a subset and that Blood Cancer UK had mentioned GPs but this didn't get me anywhere...

[newyork8]

Is the logic that those under treatment will be taking drugs that lower reactions to vaccines or lower the ability of the immune system to mount a defense and therefore qualify but if a cancer patient is not under treatment the immune reaction should be normal? This is flawed logic for us in that by definition CLL patients largely have defective/damaged immune systems so essentially should be in the treatment pool from the start of CLL diagnosis! I realize we are under different healthcare regimes in the US vs UK. Pros and cons to each of course. Am I wrong in stating that an overarching concern in the UK regarding all treatments is the cost or cost/benefit analysis to society of the proposed drug or therapy? In other words, cost containment is the major focus? In the US Healthcare is about 15% of GDP!..and rising.. However, I could go today to dozens of locations within 20 minutes of me and get any vaccine I wished and likely at no cost. I have had 4. Tourists from other countries are coming to the US for this reason. Of course, the flipside is that many people are financially challenged and even ruined by the high cost of medical services which in most cases falls on the individual to arrange and pay for (expensive) insurance. Even at 65 there are high costs to Healthcare once you are in Medicare. It's expensive to get sick so don't get sick! Curious, what is the marginal tax rate of a UK taxpayer at say 70,000 pounds and at 280,000 pounds. Or quid, right?

[g684 in reply to newyork8]

I think that your logic is correct. People "under treatment" may have lower reactions. Those on W&W also have lower reactions compared to those without CLL. (see Antibody Responses After First and Second COVID-19 Vaccination in Patients With Chronic Lymphocytic Leukaemia papers.ssrn.com/sol3/papers...

I believe the objective here in the UK is to prevent hospitalisations. The constraint in this case is probably more around the logistics of physically getting jabs into arms, and that drives the priority list. In my opinion, it is more about the organisation and management of our health services, rather than a pure cost constraint.

My understanding is that people under treatment may have even lower reactions than those on W&W. So, I can understand why people in this situation would be further up the list.

Currently, healthcare here in the UK is funded via general taxation, and is provided on an "as needs" basis. The overall system is cost constrained, hence we have waiting lists. These again are based on priority, i.e. as you get more sick your priority increases... in theory at least!

I understand that the introduction of new treatments is supposed to be evidence based and takes into account cost effectiveness. This is probably why new treatments seem take a long time to become mainstream here in the UK.

That is the downside of our system... However, on the plus side, we do not have the worry regarding individual affordability.

[newyork8 in reply to g684]

Are vaccines given in local pharmacies? We have availability in major pharmacies and even some grocery stores so in big cities probably no more than 10 minutes away from a place to get the vaccine.

[Belfastbees in reply to newyork8]

It's worth bearing in mind the input from the ceo of astra zeneca, I think this or last week. He has advised that boosters most likely won't be required. He further went on to say that if this goes ahead this muddies the waters in the research within the population at large to establish how effective the vaccines are, and how well they are protecting over time. Yes, this is one big experiment still. I would guess that ultimately all aged and all immuno-suppressed will be dosed again, there is evidence that the vaccines are waning after all. The question is where do they stop, obviously we benefit in others around us having it too. That certainly is a quandary.

The ethical question also needs to be considered, is it proper to give a third dose to (some/ all, many/ few) when many countries are struggling to get vaccines to mount any sort of meaningful vaccination program. I'd say there will certainly be a limit in any booster program not least for this reason.

Finally the opinion that most (perhaps not us and our bad blooded counterparts) may benefit greater from having been vaccinated twice and just becoming exposed to covid. Can't argue with the logic there, but there will be some whoopsie amongst some of these people who for some reason don't tolerate infection well. On the whole this approach probably affords the best boost possible,eexposing immune systems to the whole virus and not just one part of it, a part which may mutate.

[g684]

After pointing my GP to the letter sent to All GPs on the 2nd of September from NHS England, I now have a Third Primary dose booked for 2nd of October.