Calling UK CLLers - Is government about to aba... - CLL Support

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Calling UK CLLers - Is government about to abandon support for protective monoclonal antibodies?

bennevisplace profile image
bennevisplace

There is ample evidence now that many CLL patients don't respond well to vaccination against the SARS-COV2 virus. At least, a sizeable fraction don't develop measurable antibodies. From big pharma's point of view, therefore, we are a gap in the market for protection against Covid, and a handful of providers are lining up to fill that gap, including Lilly, Regeneron and Astrazeneca sciencemag.org/news/2021/01... As prophylactics, these drugs are still in clinical trials.

Astrazeneca made prior agreements to supply its long-acting antibody, known as AZD7442, in both the USA and the UK. The US government ordered up to 700,000 doses and the UK government 1 million doses, see bloomberg.com/news/articles...

It seems that Astrazeneca expects to release results of their phase 2/3 trial of AZD7442 by the end of June. But ahead of those results, it is reported that "the U.K. government has rethought plans to buy one million doses" fiercebiotech.com/biotech/a...

This may just be an unfounded rumour of course. But if the UK government were to withdraw its support for AZD7442, and fail to support any protective monoclonal for use by the NHS, it could leave many immunocompromised people, including CLL patients, in the invidious position of needing to shield until Covid is well and truly over.

This is not a message of doom and gloom, just a heads up. We should watch developments and be prepared to launch a concerted campaign if necessary.

31 Replies

Thanks - I think!Cx

I would like to see the blood cancer charities involved in publicising the little known fact that many of us do not respond well to vaccinations and won't have protection to the same degree as the general public.

I quite agree Ghounds. Blood Cancer UK is aware of the issue, but I don't know how much leverage it has with government.

Various cancer charities have MPs as patrons. They should be amenable to posting questions in the House.

I totally agree. I would like to see it in the media, let alone in government! I’m with you on the campaigning front. CLLers Unite! Only no mass demonstrations, ok?

tubbing profile image
tubbing in reply to ChristyAnne

There was an article on "Lorraine" the other morning, which Blood Cancer UK shared to Facebook about the blood cancer patients unfortunately it doesn't seem to be on their site yet

ChristyAnne profile image
ChristyAnne in reply to tubbing

Thank you. Will have to check that out. I do follow BCUK, but the only notifications I get are fundraising.

There's a short clip of the Lorraine interview on the Daily Mail link.in my reply to Mbear below. There's also this interview with the Evening Standard

youtu.be/_9fbxhEE7oU

Hi thank you for this information, something we need to keep an eye on.Ann

I would not quit being extra cautious just because these were at disposal. As a last resort, they could come handy though.

bennevisplace profile image
bennevisplace in reply to LeoPa

Agreed, we CLL folk need to keep up our guard until risk of infection has abated. But the way things are going we (in the UK and elsewhere) are in for a long wait. Meanwhile wouldn't it be nice if we could rejoin the rest of society with a shield in our blood.

I appreciate that the efficacy of these MAbs as prophylactic is not yet established. But before trial results are in, it seems crazy to write them off - and with that the social prospects of immunocompromised people.

I hope the Bloomberg rumour was just an attempt at teasing the stock market.

It's a difficult one for the government as because of Covid19 there will be limited resources. Personally I am happy to continue semi shielding until the covid risk decrease and money spent of more urgent critical cancer treatments that were delayed.

PaulaS profile image
PaulaSVolunteer

During my 3 monthly checkup last week, I asked my haematologist if I'd be given monoclonal antibodies if I got Covid. She said I wouldn't, as they'd been shown not to be effective.

I didn't question any further, but I would've been interested to know her evidence for that.

Paula (in England)

ChristyAnne profile image
ChristyAnne in reply to PaulaS

About 3 weeks ago, when speaking with Dr Helen Parry at the University of Birmingham (UK) about their study on efficacy of Covid vaccinations for CLL patients, I asked about the prospect of monoclonal antibodies for us... Without being committal, she responded very positively about that possibility. I took that to he encouraging, but with the government and media’s seemingly purposeful avoidance of mentioning our situation, I am feeling that we’ve been abandoned.

PaulaS profile image
PaulaSVolunteer in reply to ChristyAnne

Thanks ChristyAnne. It's interesting to know that Dr Parry was positive about monoclonal antibodies.

I've heard a few mentions of the plight of immuno-compromised in the media, so I don't feel we've been completely abandoned. But I agree it needs to be taken much more seriously and given more publicity.

The saying "no one is safe until everyone is safe" is also relevant here.

Paula

ChristyAnne profile image
ChristyAnne in reply to PaulaS

My antennae are always well and truly up; I wish I had been watching/listening to the same sources you have. Perhaps I’d be feeling less aggrieved about it.

PaulaS profile image
PaulaSVolunteer in reply to ChristyAnne

It was only 2 or 3 times that I heard it, ChristyAnne, but I remember feeling very grateful. Wish they'd keep on saying it though. (It was on TV but I can't remember which channel(s) now.)

Paula

ChristyAnne profile image
ChristyAnne in reply to PaulaS

I did see a couple of mentions about our group during lockdown, but not a peep since official ‘unshielding’ about our plight regarding vaccine responses. Ah, well.

PaulaS profile image
PaulaSVolunteer in reply to ChristyAnne

Yes, earlier in lockdown they did give a bit more publicity to "shielders". But more recently I've seen mention of our poor vaccine responses too. I think one was a local TV station, interviewing someone.

I don't think the message got through to many people though... I agree that we need a louder voice. It's very hard when others assume we're safe because we've had the jabs.. :-(

ChristyAnne profile image
ChristyAnne in reply to PaulaS

Absolutely. Did you see Mbear’s comment? VERY encouraging! Fingers crossed!

bennevisplace profile image
bennevisplace in reply to PaulaS

I'd take your haematologist's statement with a pinch of salt. Either she has an infallible crystal ball or her knowledge of this particular subject is not up to date.

Early efforts with monoclonals gave patchy results, and it subsequently became clear that "the timing of initiating MAB therapy is a crucial factor in determining its efficacy against COVID-19" news-medical.net/news/20210...

If you really want to test your consultant, set them a quiz based on nature.com/articles/s41577-... easily the most exhaustive review I've seen of monoclonal antibodies to Covid19 (and to other viruses).

Bottom line: MAbs as a therapy can be effective. At one stage more than 50 anti-Covid MAbs were in development. Research continues to establish which are the most efficaceous combinations; which patient groups benefit most; optimum dosing at what stage of disease; efficacy of prophylactic MAbs; duration of protection; etc.

A couple of parliamentarians asked the Dept of Health about MAbs in March and received assuring responses

questions-statements.parlia... (Lord Bethell is responsible for representing all health matters and legislation in the Upper House)

"Treatments containing COVID-19 neutralising antibodies have been secured from AstraZeneca to support immunocompromised people who will not be able to benefit from a COVID-19 vaccine.  The antibody treatment currently being developed by AstraZeneca is a combination of two monoclonal antibodies and has the potential to be given as a preventative option for people exposed to the virus and to treat and prevent disease progression in patients already infected by the virus if successful".

simonfell.org/gskblog/2021/...

"A good defence rests on having a good range of options. Kate Bingham said recently that not having monoclonal antibodies as part of our response leaves us with 'a gap in our armour'.

“Could my RHF update the House on his Departments plans on this subject?”

Responding, the Secretary of State confirmed that the Government are working ‘very hard’ on the subject, saying:

“Yes, this is an incredibly important subject and we are working very hard on it with clinical leads and external experts.

The Bloomberg article suggests a recent change of tack, for non-scientific reasons.

Check out Monica Mendelsohn Facebook page. She is the founder for Follicular Lymphoma and was being interviewed on Tuesday's, Lorrain programme. Herself diagnosed with blood cancer and after vaccines discovered she has gained no immunity. She is also the vice president of Facebook and intends to challenge the government re their lack of support for people with blood cancers. At last a voice, to champion our cause, giving much needed hope, something we all need.

bennevisplace profile image
bennevisplace in reply to mbear

Yes indeed, we need vocal spokespersons. Perhaps someone to act as a focal point in a campaign? Is Monica related to the Lord Mendelsohn who raised the issue in the upper house?

ChristyAnne profile image
ChristyAnne in reply to mbear

Ohh, THANK you! That’s brilliant news! I shall look for it and share it on my FB page. x

bennevisplace profile image
bennevisplace in reply to mbear

Is this who you mean? dailymail.co.uk/femail/arti... She is the wife of Baron Jonathan Mendelsohn, who raised the issue in the House of Lords.

I've just been looking at a couple of articles about her in one of our best (cough, cough) -journalistic rags, about Lady NICOLA Mandelsohn, who is - as you say - married to Lord Mandelsohn, and is European Vice President in Facebook. Apparently, she was on Lorraine and Victoria Derbyshire shows. I have shared it on my Facebook page. Not that I have a lot of followers.. I try to keep it to 'real' friends, so have a cull now and then! So... FWIW..

mbear profile image
mbear in reply to bennevisplace

Yes that's the one.

Further to my previous comment, I have been looking at the questions that Baron Mandelsohn asked in the House of Lords on 14th April concerning shielding and vaccinations for people with blood cancer, and apparently they were answered by the "relevant government department", but there was no information about the answers given. Do you know how that works? Are we able to access those replies? I feel another letter to my MP coming on.

Try this search facility, questions tabled and answered. Dates, keywords, names. It's a bit fiddly but may turn up what you're looking for.

questions-statements.parlia...

The earlier question tabled by Lord Mendelsohn was answered by Lord Bethell for the DHSS.

Thank you. I will take a butcher’s at that in a while. x

Me, again... Sorry, folks! A thought... I belong to a local volunteer Facebook group.. one that sprang up when Covid arrived. They have about 170-ish members, private group, and there are loads, all over the country.. so if you belong to one, and would prefer not to post the Lorraine and other ITV videos on your own page, you might feel ok about sharing something there instead, to help raise awareness. #justsayin

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