Off topic maybe - petition for antibody testing for immunosuppressed

[Haz58]

Please see this link its for a petition about immunosuppressed and vaccine antibody testing and ffp3 masks.

Protection for clinically vulnerable people in the UK

chng.it/cW6b2Ddf via @UKChange

[Moomin8]

Done 👍

[jigsawpuzzler]

Done too!

[LuckyMB78]

Signed 👍🏽

[springcross]

👍

[Circledancer]

Signed xx

[Gigi71]

Signed X

[lucymead]

Hi Hazel done it and chipped in. I got my own test it cost £50. I have now started back on Abatacept injections and need to know how low my antigens go.

[Runrig01]

The statement is confusing as it interchanges terminology between CEV and CV. Not all CEV need antibody testing, only those on immunosuppressants, which is around 500,000 of the 3.7 million it refers to. The octave study found CEV not on immunosuppressants mounted a similar response to vaccines as the rest of the public. The risk therefore to most CEV has reduced considerably, and it is now only those on immunosuppressants, who still risk severe illness or death. So I agree antibody testing should be available to all on immunosuppressants. However we should be aware, that if there is future boosters advised for immunosuppressed, it could be a large number would not be offered the booster, if they were found to have produced sufficient antibodies. That then could also affect access to the treatments currently offered to those on immunosuppressants. Where only those testing low enough will be offered. So we have to be aware this could have implications. There is still separate government guidance for CEV on immunosuppressants, compared to standard CEV. Just trying to see both perspectives of this. I know if I was just above the level of antibodies required to be offered treatment, I’d probably feel quite anxious.

[Haz58 in reply to Runrig01]

But at least you would know. That’s what I don’t like…not knowing.

[Runrig01 in reply to Haz58]

I have tested my antibody levels through private testing. It offers some reassurance, but you still don’t know B & T cell response. You also don’t know how quickly it depletes, so is only really telling you that moment in time

[Haz58 in reply to Runrig01]

True, never looked at it that way. I guess we’d need testing monthly.

[Hidden in reply to Haz58]

I agree with everything Maureen said. The NHS simply don’t have the capacity - financially, or logistically - to test those of us effected on a six monthly basis, never mind a monthly one. We also still don’t have enough understanding to be able to say x amount of antibodies is enough. Unless I’ve missed some new research, my understanding is that we still haven’t got quantitive thresholds for antibodies that mean we can categorically say this person is safe, this person isn’t. A positive result is anything over 5, but it could be you need a level over 400, or 1500, or 2100 to be safe. We just don’t know. Even ignoring that ongoing lack of understanding, though, it’s more complex than that. If we keep regularly checking antibody levels amongst those that are immunosuppressed, what do you do when levels drop? Formal shielding? More vaccines? It might be a tiny minority, but some of us are also in a situation where we’ve been medically advised not to have any further vaccines.

I understand what you’re saying about not knowing, I can empathise with that completely, and I’m not being critical of your intention, or wanting to be seen as negative, but there’s more to it than saying these things need to be provided to those half a million immunosuppressed people that have been determined to still be high risk. Particularly when they are already available on a private basis. You can pay to know whether you’ve mounted an immune response and how that response is waning over time. FFP3s are also widely available for purchase. I say this both as one of the half a million that is still considered high risk, and someone that’s financially dependent on benefits. We have to be realistic about what is an appropriate expectation of a chronically underfunded service that is already unable to cope, particularly when this is going to become an endemic situation.

[Haz58 in reply to Hidden]

I get what you say. This is not my petition but one I got sent to me, I thought even if it just hi-lites us immunosuppressed to the government, as they seem to have forgotten about us, it may have done some good, something good may come from it. Many people on here have said they felt like ‘the forgotten ones’.

[Hidden]

Signed xx

[LinaM]

Signed! Great idea x

[tangolil]

Done.