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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Immunocompromised people should receive treatment that would prevent them from being infected with COVID-19.

119 replies

dianthus101 · 02/08/2022 11:34

Many people including cancer patients, people on immunosuppressive medications, transplant recipients, people with primary and secondary remain extremely vulnerable to Covid, even after vaccination. For them lockdown has not ended and if anything, it is even worse than 2020 as COVID-19 infections are very high in the community. Some immunosuppressed people have barely been outside since 2020 and the psychological distress is enormous.

I'm not sure if people realise but an antibody treatment (Evusheld) that would prevent them from being infected was authorised by the UK regulator authority (MHRA) in March this year. Despite the fact that the evidence for this treatment is greater than it was for the COVID-19 vaccines (when they were rolled out) it is still not available in the UK (privately or via the NHs) even though it is available in 32 other countries including the US and many European countries. This is because the UK government have not bought any. There doesn't seem to be much publicity about it and I know many immunocompromised people feel very forgotten.

bloodcancer.org.uk/news/leading-charities-and-clinicians-urge-government-to-secure-evusheld/

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DizzyWhoreI804 · 02/08/2022 19:01

That 33% of people think it unreasonable people like me be protected from a virus that has killed 200,000 people in 2.5 years, makes me realise how little society values me & people like me

Absolutely this.

nether · 02/08/2022 19:01

I agree with you (strongly) apart from the fact that we are used to looking at the cost effectiveness of drugs, or at least the NHS is

I agree with you. NHs does look at the cost of drugs and their effectiveness

What I was (clumsily) getting at is that Jo Public isn't used to looking at how much drugs cost when added up. So they just see big numbers, without realising it's just one of a lot of big numbers. Possibly not realising that £400m is not an unprecedented cost (and of course for this is would benefit over 10x as many people as had branded humira (adalibumab)) - but it looks whopping when you don't know the context and aren't familiar with the sums often involved.

Another bit of context - each person who gets trastuzumab deruxtecan (a newish breast cancer drug) costs NHS nearly £120k each. Those recipients probably don't want to die of covid either.

dianthus101 · 02/08/2022 19:03

nether · 02/08/2022 19:01

I agree with you (strongly) apart from the fact that we are used to looking at the cost effectiveness of drugs, or at least the NHS is

I agree with you. NHs does look at the cost of drugs and their effectiveness

What I was (clumsily) getting at is that Jo Public isn't used to looking at how much drugs cost when added up. So they just see big numbers, without realising it's just one of a lot of big numbers. Possibly not realising that £400m is not an unprecedented cost (and of course for this is would benefit over 10x as many people as had branded humira (adalibumab)) - but it looks whopping when you don't know the context and aren't familiar with the sums often involved.

Another bit of context - each person who gets trastuzumab deruxtecan (a newish breast cancer drug) costs NHS nearly £120k each. Those recipients probably don't want to die of covid either.

Very true.

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PastMyBestBeforeDate · 02/08/2022 19:26

The very drug that is keeping my illness at bay allowing me to continue to work and pay tax but is also causing my immunosuppression, costs far, far more than the £800 for a dose of Evushield. Buying the machines, peripherals and paying the staff to administer my medication probably costs more than Evushield.

IneffableGenderFairy · 02/08/2022 19:53

33% disagree? Wow.

Why?

Actually, scratch that. I think it would upset me.

dianthus101 · 02/08/2022 19:58

IneffableGenderFairy · 02/08/2022 19:53

33% disagree? Wow.

Why?

Actually, scratch that. I think it would upset me.

Nobody has explained why they just disagree so far so best ignored.

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RoseAndRose · 02/08/2022 21:13

I'd actually be quite interested to know why those MNetters think the treatment should not be rolled out (despite MHRA authorisation)

And wondering if they oppose roll out of other new drugs too

dianthus101 · 03/08/2022 09:41

RoseAndRose · 02/08/2022 21:13

I'd actually be quite interested to know why those MNetters think the treatment should not be rolled out (despite MHRA authorisation)

And wondering if they oppose roll out of other new drugs too

I think that some people are not getting the fact that vaccination does not always work on people who are very immunocompromised and this treatment would only be offered to those people.

There was also someone who thought I was suggesting that immunocompromised people are forced to have the pre exposure prophylaxis treatment (I should perhaps have said “offered treatment” rather than “receive treatment” in the title) and there was someone who believed the bullshit about the government waiting for more results on efficacy and safety before buying it (as if they know more than the FDA, MHRA and every other regulatory authority in the world).

Shame people can vote without or before reading the thread.

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ChairOfInvisibleStudies · 03/08/2022 09:52

RoseAndRose · 02/08/2022 21:13

I'd actually be quite interested to know why those MNetters think the treatment should not be rolled out (despite MHRA authorisation)

And wondering if they oppose roll out of other new drugs too

MHRA approval isn't enough to secure reimbursement for a drug in England and Wales - NICE approval is also required, which requires thorough demonstration of cost effectiveness compared to comparator therapies. This requirement was relaxed for covid therapies for a time during the pandemic but is now being reinstated. To my knowledge, evushield has not yet undergone NICE assessment, therefore cannot be recommended for use in NHS England or Wales, although please correct me if my information is out of date.

Should it be assessed? Yes, absolutely. Should it be reimbursed without undergoing assessment? No, in a finite resource system, cost effectiveness is a vital aspect of decision making.

dianthus101 · 03/08/2022 10:07

ChairOfInvisibleStudies · 03/08/2022 09:52

MHRA approval isn't enough to secure reimbursement for a drug in England and Wales - NICE approval is also required, which requires thorough demonstration of cost effectiveness compared to comparator therapies. This requirement was relaxed for covid therapies for a time during the pandemic but is now being reinstated. To my knowledge, evushield has not yet undergone NICE assessment, therefore cannot be recommended for use in NHS England or Wales, although please correct me if my information is out of date.

Should it be assessed? Yes, absolutely. Should it be reimbursed without undergoing assessment? No, in a finite resource system, cost effectiveness is a vital aspect of decision making.

They did not say that NICE need to look at cost effectiveness before it is available in the UK in March (or anytime since) and it is not on the list of technologies/drugs for NICE to assess in the future. That's not how it works anyway. NICE advise on whether drugs should be available via the NHS in England and Wales (The SMC decide for Scotland) but they are usually already available at that point. If they decide they don't want to pay for it via the NHS, it is still available on private prescription.

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ChairOfInvisibleStudies · 03/08/2022 10:22

dianthus101 · 03/08/2022 10:07

They did not say that NICE need to look at cost effectiveness before it is available in the UK in March (or anytime since) and it is not on the list of technologies/drugs for NICE to assess in the future. That's not how it works anyway. NICE advise on whether drugs should be available via the NHS in England and Wales (The SMC decide for Scotland) but they are usually already available at that point. If they decide they don't want to pay for it via the NHS, it is still available on private prescription.

Nothing you've said contradicts what I've said - under normal circumstances drugs won't be reimbursed for use on the NHS in England and Wales unless they have received NICE approval in addition to MHRA licensing. Therefore the treatment cannot be 'rolled out', which to me implies availability on the NHS, until that has happened.

In terms of the availablity for private prescription, the DHSC have said they want to see additional evidence on its effectiveness against omicron, which seems reasonable given that this is the dominant variant in the UK and the mechanism of action means that the treatment efficacy may be affected by variants.

As I said, I believe that NICE/SMC/NCPE should assess it, but I wanted to highlight that MHRA approval isn't the slam dunk for market access that many people on the thread appear to believe.

dianthus101 · 03/08/2022 10:23

dianthus101 · 03/08/2022 10:07

They did not say that NICE need to look at cost effectiveness before it is available in the UK in March (or anytime since) and it is not on the list of technologies/drugs for NICE to assess in the future. That's not how it works anyway. NICE advise on whether drugs should be available via the NHS in England and Wales (The SMC decide for Scotland) but they are usually already available at that point. If they decide they don't want to pay for it via the NHS, it is still available on private prescription.

Just noticed that it was put on the list of technologies to be assessed by NICE on 29th July. That would be after the pressure from leading clinicians and charities though and doesn't explain why nothing has happened since March. It also doesn't explain why it's not available privately. I'm sure many immunocompromised people would pay £800 so they can stop shielding, and live their lives like the rest of the population.

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ChairOfInvisibleStudies · 03/08/2022 10:28

That's great news. Charities and clinicians will have been consulted as stakeholders but the decision to add it to the list of upcoming TAs will have involved wide consultation and will not be merely a response to pressure. One of the downsides of NICE is that they move quite slowly - it's the flipside of the thoroughness of their approach.

ChairOfInvisibleStudies · 03/08/2022 10:31

By the way, on a personal level I'd love to see the drug approved for use on the NHS - if the efficacy can be dominated I have friends who would definitely benefit. But I also believe in evidence-based medicine and following due process.

ChairOfInvisibleStudies · 03/08/2022 10:32

Dominated? Thanks autocorrect - I meant demonstrated!

dianthus101 · 03/08/2022 10:39

ChairOfInvisibleStudies · 03/08/2022 10:22

Nothing you've said contradicts what I've said - under normal circumstances drugs won't be reimbursed for use on the NHS in England and Wales unless they have received NICE approval in addition to MHRA licensing. Therefore the treatment cannot be 'rolled out', which to me implies availability on the NHS, until that has happened.

In terms of the availablity for private prescription, the DHSC have said they want to see additional evidence on its effectiveness against omicron, which seems reasonable given that this is the dominant variant in the UK and the mechanism of action means that the treatment efficacy may be affected by variants.

As I said, I believe that NICE/SMC/NCPE should assess it, but I wanted to highlight that MHRA approval isn't the slam dunk for market access that many people on the thread appear to believe.

No, whether a drug is safe and effective and can be prescribed privately is not decided by the DHSC. That is the job of the MHRA and they have given approval.
Regardless, there is evidence that evusheld is effective against omicron.

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ChairOfInvisibleStudies · 03/08/2022 10:43

It literally says on the website you linked that the DHSC have asked to see additional evidence on the efficacy against omicron before deciding whether to buy evushield.

Icedbannoffee · 03/08/2022 10:45

MPs that have been challenged on this say it's status is commercially sensitive whereas the health sec says they don't invest in this type of thing (vaccines not preventative then no?). So sadly fuck knows. Optimistically it might be going through a proper, legal, open and fair procurement process as all procurements of this value should in line with regs- but I suspect the truth is more of a shit show.

dianthus101 · 03/08/2022 10:47

ChairOfInvisibleStudies · 03/08/2022 10:28

That's great news. Charities and clinicians will have been consulted as stakeholders but the decision to add it to the list of upcoming TAs will have involved wide consultation and will not be merely a response to pressure. One of the downsides of NICE is that they move quite slowly - it's the flipside of the thoroughness of their approach.

So you think it just a coincidence that the decision was made the day after clinicians representing 17 different clinical specialities, released a clinical consensus statement saying that there is sufficient evidence that the Covid-19 preventative Evusheld would have clinical benefit to people who are immunocompromised, and a protective antibody treatment program should be delivered as soon as possible? 🙄

NICE actually move quite quickly nowadays, particularly in regards to anything to do with COVID-19 and no doubt there would have been a decision on whether this should be funded by now if they had been asked to give it in March.

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ChairOfInvisibleStudies · 03/08/2022 10:49

It does sound like the health sec its talking crap (surprised?) - HIV PrEP would be a prime example.

dianthus101 · 03/08/2022 10:49

ChairOfInvisibleStudies · 03/08/2022 10:43

It literally says on the website you linked that the DHSC have asked to see additional evidence on the efficacy against omicron before deciding whether to buy evushield.

Before deciding whether the NHS should buy it. They don't make decisions on whether drugs should be prescribed privately.

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ChairOfInvisibleStudies · 03/08/2022 10:54

dianthus101 · 03/08/2022 10:47

So you think it just a coincidence that the decision was made the day after clinicians representing 17 different clinical specialities, released a clinical consensus statement saying that there is sufficient evidence that the Covid-19 preventative Evusheld would have clinical benefit to people who are immunocompromised, and a protective antibody treatment program should be delivered as soon as possible? 🙄

NICE actually move quite quickly nowadays, particularly in regards to anything to do with COVID-19 and no doubt there would have been a decision on whether this should be funded by now if they had been asked to give it in March.

For a while NICE were prepared to issue provisional rapid guidance on covid technologies. That is now changing - see the upcoming MTA for covid antivirals, for example - that consultation began in January and the first committee meeting isn't expected until October www.nice.org.uk/guidance/indevelopment/gid-ta10936

dianthus101 · 03/08/2022 10:57

ChairOfInvisibleStudies · 03/08/2022 10:54

For a while NICE were prepared to issue provisional rapid guidance on covid technologies. That is now changing - see the upcoming MTA for covid antivirals, for example - that consultation began in January and the first committee meeting isn't expected until October www.nice.org.uk/guidance/indevelopment/gid-ta10936

The antivirals are already being used though so not much urgency required.

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ChairOfInvisibleStudies · 03/08/2022 11:02

Yes, because they were assessed under the rapid programme. That route is now being phased out, so new things coming through will have to go through the normal process

dianthus101 · 03/08/2022 11:07

ChairOfInvisibleStudies · 03/08/2022 11:02

Yes, because they were assessed under the rapid programme. That route is now being phased out, so new things coming through will have to go through the normal process

The "normal process" is also faster where necessary. www.nice.org.uk/about/who-we-are/corporate-publications/the-nice-strategy-2021-to-2026

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