Access to nMAbs & Antivirals

This is so worrying. My husband has relapsed Myeloma and I feel we are no further forward than we were 2 years ago. Why is it such a battle when your not feeling great we are always the ones who have to do the chasing. :frowning:
Stay safe everyone.

1 Like

Any news on the brief for the government with the 5 tests to make sure people at highest risk from Covid-19 are well supported to live with Covid-19 now and into the future.?

I will copy your question to @BCUK_SupportTeam for you.
Yes, i agree why is it such a battle when your not feeling great we are always the ones who have to do the chasing.
Take lots of care of yourselves.

Much appreciated Erica, there has been no news on this for at least 2 months.

1 Like

Hello all
Two messages here…
The Evusheld campaign has passed the 10,000 signature threshold and the Government response is “Keep Calm, keep taking the tablets and testing and maybe they will look at this option once further data re Omicron is available…” so don’t hold your breath BUT keep spreading the word - there are now 13,000 signatures so we are on our way to the 100,000 required to get this debated in Parliament.
Other point - The “Distance Aware” campaign is a hopeless flop; it started in Wales and spread to Scotland and came to a halt because English NHS did not follow suit and because it was poorly publicised (surprise!). In Scotland badges (too small, that went rusty in the rain) and lanyards were available in Libraries and Asda (my nearest is two hour drive) but I did hear of an announcement in our local Co-op !! Anyway as it seemed like a great idea for us 500,000 immunocompromised so I took the initiative and distributed posters (yes they forgot to send them out) to the GP surgery, Hospital, School, Fire Station, Mountain Rescue, high St chemist and a few shops - and wear my Lanyard at all times BUT now because there is no national recognition people (tourists and visitors) come up (close) and peer at the lanyard badge and ask what it is - admittedly then they back away but too late! !
Like most others I have had endless problems with shielding lists and probably pointless innocculations and wonder when if ever the non Mrna vaccines that could give us long term protection might be considered ???
In the meantime lets keep pushing for Evusheld - a step in the right direction…
Good Luck


Stella Creasy
Labour
Walthamstow
Commons

To ask the Secretary of State for Health and Social Care, whether his Department holds any list of patients who have been identified as immunocompromised and are eligible for new covid-19 treatments first…

Show full question

This answer is the replacement for a previous holding answer.

Answer


Maggie Throup
Conservative
Erewash
Commons

Answered on

21 March 2022

The Department commissioned an independent expert group to identify clinically eligible patient cohorts most likely to progress towards developing severe COVID-19. These cohorts form part of an evidence-based clinical policy for the treatment of COVID-19, agreed by the United Kingdom Chief Medical Officers. The treatments available include the monoclonal antibody therapy sotrovimab, as well as the oral antiviral treatments molnupiravir and nirmatrelvir + ritonavir.

The Department does not hold a list of these patients, nor any identifiable personal information

So they don’t seem to even know who we are!

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.

2 Likes

‘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.)

2 Likes

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:

2 Likes

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.

2 Likes

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’

2 Likes

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.

1 Like

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.

1 Like

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.

1 Like

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.

1 Like

@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.

2 Likes

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