Access to nMAbs & Antivirals

Hi @MCA, thank you for your response. Please be assured that we totally understand how important it is for the blood cancer community to understand more about future procurement and roll out of Evusheld. We know Evusheld could be life-changing for many people with blood cancer, so we’ve been working hard behind the scenes to get answers, consistently asking the Department of Health and Social Care to provide us with a timeline of their next steps.

The clinical data on Evusheld’s effectiveness was gathered before the emergence of the Omicron subvariants BA.1 and BA.2 and for several months it was unclear whether the drug would still be effective. But now there’s emerging evidence that Evusheld is likely to help prevent immunocompromised people becoming seriously ill. After reviewing the available evidence, our position is that Evusheld should be made available for people who are not likely to mount any effective response to vaccines. The Department of Health and Social Care (DHSC), however, tells us that they will not buy doses of Evusheld until the UK Health Security Agency (UKHSA) has conducted lab-based research on its effectiveness against Omicron.

This UKHSA research on Evusheld and Omicron is reportedly ongoing. We have been asking the Government to provide more transparency around when they will make a decision about whether to procure Evusheld, and how this decision is being made. We also want to understand what additional insights the UKHSA research will provide to already-existing lab-based research. So far, they have refused to provide us with this crucial information. So, we are calling on the Government to set out a clear plan and timeline, including the criteria they are using to review Evusheld and how they will determine eligibility.

We’ve written a template letter that you can use to send to your MP asking them to write to the Secretary of State, and this will be shared with you imminently.

You also mentioned your concerns around some people’s difficulties in accessing antivirals and antibody treatments. This is totally understandable – we know that there are people on the eligibility list who have struggled to access these after a positive covid test, and this is unacceptable. It’s really important to remember however, that for most people, this process has worked well, and they have been able to access these treatments within five days of a positive lateral flow or PCR test. What’s really important, is that people keep their clinical team updated with what’s going on, making them aware of their positive test straight away, and keeping them in the loop of any conversations they’re having with a CDMU or any other service assessing their eligibility for covid treatment. If anyone is having trouble, you’re more than welcome to give us a call on the support line, and we will do whatever we can to support you.

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‘Distance Aware’ is a joke. My choir rehearses in a Middle School, which is plastered with posters saying ‘6 feet saves lives’. For a start, what middle-aged man came up with this brilliuant campaign? It’s a school. Schoolchildren don’t think in imperial measures. Besides, 6 ft is 1.8 metres. And the ‘saves lives’ phrase is reminiscent of a WWII slogan; perhaps"middle-aged" is an underestimate.

(My mnemonic for the 2 metre rule is If Richard Osman fell down flat, would he reach you? If so, you’re too close.)

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Thank you @Alice_BloodCancerUK for the link and @Fullofbeans for your comments. I am incredibly fortunate that my immoglobulins have gradually made a good comeback so my consultant has (as you suggested he might) relaxed a bit on the Covid front.

We’re making the most of the weather to socialise outside and indoors with windows open if everyone has LFTd. I feel as if we’re suddenly having a really ‘wild’ social life (haha, not what our children would call it…) because of the contrast with total shielding. Never would I have thought a visit to a garden centre could be such an exciting experience!!

Maybe that’s one thing about blood cancer that after many downs, the ‘ups’ seem enormously wonderful :potted_plant: :cherry_blossom:

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That’s great news regarding your immoglobulins, @Coastgirl. And you made me laugh out loud with your comment about socialising - and I know exactly what you mean! I’ve started to live again a bit, and me and my husband giggled like naughty school kids when we went into several shops for the first time (with masks on) on a quiet day. And I almost felt like I’d been out on the town after I’d been to the supermarket one evening! I’m still finding going to a cafe quite daring. But it’s just wonderful seeing my friends and doing these things. You enjoy yourself too - it’s so well deserved.

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Oh @Coastgirl and @Fullofbeans I laughed at both of your posts, Yes, I also feel so naughty, giggly and guilty going out and I find myself looking behind me in case someone has seen me.
Yes, somehow a garden centre feels safer and I don’t even have a garden, I live in a flat !!!
So far I have celebrated a 50th with someone and with someone else an 80th birthday both of which were 2 yrs ago.
Oh, to see friends is wonderful and when we start chatting those 2 yrs melt away.
My parents would have said I am gadding about, my son would just look on in disbelief, shaking his head. It’s not as if we go out after dark.
I have now realised the mental health benefits of interacting with people and what I want to do and with whom.
You can tell I met a friend this morning.
I just really loved your last paragraph @Coastgirl , so, so true and life is for living.
As Rod Stewart sings ‘Love the life you live and live the life you love’

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Is there any data on what proportion on those who received the letter/email that they would be considered for treatment if testing positive and still didn’t get a call?
More than 4 days since i reported a positive result and i have heard nothing. Felt rubbish but didn’t feel bad enough to make a fuss.

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Oh @Chrispy I am so sorry that you reported positive, felt rubbish and did not get the call.
That’s the trouble in a way you felt rubbish so did not feel up to chasing it up, but not rubbish enough to need to chase it up, if you know what I mean
Look after yourself and be kind to yourself, Covid can take it’s toll.

Hi @Chrispy ,

Concerned re your message I hope tomorrow your GP, 111 or Consultant can get you sorted. Other than post above not aware of any info.

I wish you well, i am lucky so far but can imagine anxious scenario.

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I messaged my gp saying i hadn’t had a call and have just received a call back from my gp who informed me i should have contacted 111 or they would have referred and that there was no automatic 24 hour call outs being made. It is now 10 days since my first symptoms and she insisted she had to refer me now even though I told her there was no point. She also asked me what immunosuppression medication i was on and why. Surely this should be highlighted on my GP records and be obvious.

Not in a good mood today so I may have said i few things i wouldn’t normally. I did say i wasn’t surprised when i didn’t get the call as nothing has gone to plan for CEV patients during covid.

Will see what happens next.

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Feels like it is now a box ticking exercise. She ticks to say she has referred me and they tick to say they have called me (assuming they do). It is too late for both of these so I don’t understand why they are doing it. My GP record has my positive result on it so it should have been done last week. This is driving me up the wall now.

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@Chrispy your frustrations with the referral system are clear. The good thing seems to be your ten days after testing positive and I assume feeling relatively OK. Your right in saying its probably too late i understand Remdesiver can be given up to seven days the other treatments up to five days.
Sadly the system is not as joined up as we would hope i.e between your doctor and the hospital, and even worse the CMDU has no access to your records, so when they do ring you theyll’ more than likely go through it all again. perhaps @BCUK_SupportTeam can report what has gone on?
I wish you well.

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Oh @Chrispy I really feel for you and feel powerless to help you with this vicious circle you are encountering.
How are you feeling now health wise?
You must feel so frustrated and exhausted with the system.
Please keep us and @BloodCancerUK posted
Look after yourself and be very kind to yourself

Thanks @Erica . I seem to have some days better than others. The coughing and runny nose are the main physical symptom but the fatigue and brain fog cause me the most problems. I am not in any danger health wise and I am wishing I never even reported the positive result or lack of response from health professionals. All seems too much hard work but I am sure in a few days things will improve. My husband is a few days ahead of me and tested negative today but his symptoms have been minor. Hoping mine will soon be negative too.

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Hi @Chrispy your symptoms sound really rotten and I bet everything feels like too much hard work.
Covid can be really nasty and the symptoms long lasting, please do not underestimate it.
As I said before really look after yourself and be very kind to yourself

So i received a message this morning from my GP stating the CMDU had not been informed of my positive test result and knew nothing of it until yesterday when my GP told them. Too late for any treatment now. I do think the NHS should update their pages and emails taking out the bit that you will be automatically called in 24 hours. It should tell you to call 111,119 or your GP to get the referral. If i had known that i may have made the effort to make the call.
I am in London so I wonder if it varies by area.

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We can pass on that feedback @Chrispy as that’s a really important point. How are you feeling today? Do you feel like you’re getting any better? Has your GP given you advice around next steps in the case that you start to feel worse? Fingers crossed you get a negative test soon like your husband’s. Take care, Alice

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Thanks Alice. I seem ok one day then worse the next so it is taking a day at a time. It is taking quite a while to clear. My GP did say to call if my oxygen saturation dropped below 92% or i felt worse. I took a walk yesterday which was quite short but later that day i felt shattered. Just going to take is slowly.

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Hi @Chrispy take lots of care of yourself, as you say in not so many words slow and steady wins the race and all that.
Be kind to yourself

I tested positive on a lateral flow test this morning and managed to get the number of the local CMDU, which I rang. At first I was fobbed off as if I was already on the virtual covid ward but with some insistence the clinical nurse specialist was consulted and agreed they could take a self referral as it was the Jubilee weekend (normally it would be through the GP).This resulted in a call from a consultant a couple of hours later. Not exactly straightforward, but so far so good (I should say that I have been lucky enough to have been on the list for recipients of addition vaccines and antiviral treatments since the beginning, which I know hasn’t been the case for many).
I was a bit puzzled by the consultant’s response and was interested to compare notes with others who have been through the same process. He said that the antibody option was not now being used as a first line treatment because it wasn’t proving as effective. Therefore it would be an antiviral option which was recommended which involved “lots of tablets”. However, as my current symptoms were fairly mild he would suggest not giving these now; but if my symptoms significantly worsened, I was to ring again.
It is true that my symptoms are just like a cold at the moment, but I had thought the earlier the antiviral treatment the better? Also I had not heard that the nMabs treatment had been downgraded - unless I got the wrong end of stick which is entirely possible!
Any thoughts?

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