Access to nMAbs & Antivirals

Hi @Alice_BloodCancerUK These NHS letters/emails seem to be coming out now

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Thanks Paul this is really helpful. I am glad to hear others have received a letter or email, I haven’t and in case I don’t, your info will be helpful in pleading my case (yet again!). Thanks so much,
Firefly

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Just received my letter. I was pleased and reassured to read it, especially in conjunction with the NHS letter Paul put up. I think that our GPs will not be involved, we are instructed to ring 111 and the local covid delivery unit will advise on treatment. I expect I’ll find out one day soon!

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Hello @UncleRoy @Lyn99 @Paul and everyone else on this thread. Just to let you know our webpage has been updated here Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK

As always, just give us a shout if you have any questions or want to talk things through with us.

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Hi Alice,
This is helpful, thank you. However - it doesn’t mention my category as being eligible for the new treatments (I have Chronic lymphocytic leukaemia (CLL), and am on watch and wait - no treatment yet). Reading the appendix to the new policy, I had thought that I am eligible, as someone with a b-cell lymphoproliferative haematological malignancy. Would it be possible for you to please check whether Chronic lymphocytic leukaemia (CLL) watch and wait-ers are eligible?
Thank you very much,
Firefly

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Hi @Firefly, good question. Our understanding at the moment is that people who have a chronic blood cancer that affects B cells, (i.e Chronic lymphocytic leukaemia (CLL)) and who are on watch and wait, are eligible for an assessment from the CMDU, should they test positive for Coronavirus. We are clarifying the eligibility criteria and will continue to review the above webpage.

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Thank you for asking this question; I’ve just been reading everything I can about Chronic lymphocytic leukaemia (CLL) (husband is Chronic lymphocytic leukaemia (CLL) W&W) and came to the conclusion that you are included … but my O Level in General Science didn’t cover all those big words!:slightly_smiling_face:. So it would be comforting to hear it confirmed by people who know what they’re talking about. Happy Christmas - and keep safe!

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Thanks Alice! That’s much appreciated x

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I couldn’t agree more! Blood Cancer UK has been the very best advocate and source of information throughout the pandemic.
Today the PCR test kit arrived so the system seems to be working. Better than any Christmas card.

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Like many others here, I received a letter today from the NHS telling me that I was eligible for these treatments, and it set out the process., which seems relatively straightforward and automatic. Great to finally have a process in place, and good to have it in place before it’s needed, rather than trying to sort it out in a rush after a positive test.

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HI @Alice_BloodCancerUK I have been sent PCR test etc but I am told as I am on treatment for CML I will not be eligible for this treatment is that correct? apparently my haematology nurse says we CMLers are not considered to need this treatment and she wasn’t sure whether we’d be offered the 4th or booster jab either, a bit disappointing since I don’t know about other CMLers but I certainly haven’t had a good antibody response to the vaccines yet.

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Hi @Ismo Thanks for sharing this with us. We appreciate how confusing and concerning this is for many.
There are some conditions as you know that are not mentioned in the eligibility list for new covid treatments at this point in time. These conditions are [CML] (Chronic myeloid leukaemia (CML) | Blood Cancer UK), CMML, MPNs (PV, ET, myelofibrosis), MDS, LGLL, and other chronic blood cancers that do not affect B cells (B lymphocytes). For people with these conditions, we are working fast to clarify with the NHS whether they might also be eligible for the treatments. The list of eligible conditions is under constant review with experts (we are also influencing by sharing our vaccine research) so it’s possible the list could be expanded. We are aware that many of people with some of these conditions have started to receive these letters however – as soon as we find out more about this we will be sure to update the blood cancer community. Whether you have been sent a letter about this or not, if you get covid symptoms, take a PCR test as soon as possible. If you get a positive PCR result, follow the instructions for your country in the box above under ‘What you need to know’
For those who have already had the first three primary doses of the Covid vaccine, this means you will now be eligible for a booster vaccine, three months after your third dose. This blog might be helpful- Why am I being invited for another Covid vaccine? - Third doses and boosters | Blood Cancer UK)
Our pages here also explain a bit more- How to book a covid vaccine if you have blood cancer | Blood Cancer UK

I do hope this helps and please don’t hesitate to contact our support line to talk things through on 0808 2080 888.

Take Care, Lauran

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Hello,
I received an email from BHS on Monday explaining process for accessing drugs and informing me I would receive a pcr test kit to keep at home. If you are on gov cev contact list you should get same info.
Lymphoma.org have details on their site too. Take care

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nhs not BHS, sorry for typo

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Somehow I seem to have dropped off the CEV list! Going to talk to my GP and see if they can sort it for me. Also hoping GP will help me to access my 4th jab/booster.
Hope everyone else is faring better!

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Thanks for the info much appreciated. I thought it might be to do with the B cells. I think the problem with CML is that patients seem to have a wide variety of responses to the vaccines ranging from those in deep remission taking no further treatment or v low dosage who seem to respond to vaccines pretty much like the general population to those of us not in major molecular remission on relatively high doses of TKIs with wonky immune systems who are not well protected. I recall being told when I was diagnosed some years ago that thanks to the TKIs since 2000 it was “the best blood cancer to have” AS far as Covid vaccine response goes it depends!.
I shall certainly follow up your info re 4th vaccine and ask for help if I have any difficulties. Thankyou

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I have Chronic lymphocytic leukaemia (CLL) (watch and wait) and have not received an email or letter notifying me that I can have access to Covid treatments (nMabs and Antivirals). I called me GP and they do not have any idea how to check / confirm that I am on the list but they do confirm that I am eligible and the same for the Haematology department at my local hospital. Ringing 119 they say the GP is the one to ensure I am on the list (refer me).

So obviously now going round in circles and have no idea where else to try and ensure I am going to receive the notification and thus access to such treatments.

Is there supposed to be an e-referral system for GPs to contact the CMDUs or NHS England to check I have no fallen off the list. I did get all past CEV notifications.

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Evidently the roll out for the group of severely immunocompromised to be considered for antibodies will be complete by mid January. With everyone eligible being sent a home PCR test to take immediately symptoms appear and once the positive result comes back the NHS board will contact the patient by phone and make the decision as to which treatment you will be offered… Antibodies or antivirals. The meds will be distributed by CMDUs and you might have to go yourself for IV or send someone else to pick up medications. If you fall ill before you get your kit you are advised to ring 111 and they will sort it out… Hopefully… That’s the theory but who knows really

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Have you tried looking in your junk mail ? After reading this forum I checked mine, and lo and behold, it slipped into my junk mail on Monday. If I hadn’t looked at the forum today, I would also be wondering where my email was. I also read how to get my 4th (booster) jab, and have sorted out the necessary letters in readiness for getting my jab at a walk in centre.

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Hi

Yes I have checked my spam and trash folders and it is not there. Got my 4th booster booked for 9th Jan (GP surgery well on the ball for that one after the hassle with the 3rd primary dose) so that is all good at least.

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