Anti Covid treatments for the Immuno-compromised

[RogerPinner]

I wrote the following to my MP on 22nd November last

David , we have corresponded about this many times, and I know you are sympathetic to the problem. Things are getting worse, not better, and despite covid numbers falling, many of us are having to become more and more cautious in our already restricted daily lives. I quote from a news article.

"Four Covid drugs which have kept thousands of vulnerable Britons out of hospital were quietly removed last week, after the NHS spending watchdog pulled funding for them.

While the Covid vaccines and boosters provide strong protection against serious illness for most of the population, about 500,000 people suffer with conditions that mean their bodies do not respond to the jabs, leaving them at serious risk from the virus.

Since last year, these patients – who primarily have blood cancers such as leukaemia, kidney disease or have had an organ transplant – have been able to access five anti-Covid drugs which prevent them from falling seriously ill and ending up in hospital. But on Wednesday, the National Institute for Health and Care Excellence (NICE) said it will withdraw four of them from NHS use as they are no longer deemed cost-effective".

I shall be grateful if you will once again ask the S of S for Health, Steve Barclay, what if anything he intends doing for us, or has this government just accepted they will lose the next election anyway, so 500,000 votes (I like to think of us as people) don’t matter."

Yesterday a received this unhelpful reply, from the DHSC .

As you have rightly pointed out, although COVID-19 vaccinations and boosters

provide a strong protection against serious illness for much of the population, some

individuals may be unable to receive or do not respond to a vaccine and are therefore at

increased risk following exposure to COVID-19.

The department is currently working with COVID-19 antibody testing experts to develop a

study, building on existing data and research, to enable more informed decisions on

clinical interventions and the level of protective behaviours based on an individual patient’s

risk. The study aims to start sampling shortly to assess the impact of the autumn booster

vaccinations. It is hoped that results of the research would inform additional guidance for

patients and the strategy for a future wider testing programme. The department will

provide more information on the pilot study when the details are finalised.

The Government has made available a range of new treatment options within the

community for patients at highest risk from COVID-19. Patients who are

immunocompromised are a priority cohort for COVID-19 treatments, which have been

available through COVID medicine delivery units (CMDUs) since December 2021.

Guidance on patients who are potentially eligible for COVID-19 treatments can be found at

gov.uk/government/publicati...

treatments-guide-for-patients/highest-risk-patients-eligible-for-new-covid-19-treatments-aguide-for-patients.

Regarding the news article referenced by Mr Lambert, the National Institute for Health and

Care Excellent (NICE) is conducting an appraisal of some of the COVID-19 treatments for

routine commissioning, through its usual multiple technology appraisal (MTA) processes.

This will involve an evaluation of the clinical and cost-effectiveness of existing COVID-19

therapeutics. This process is ongoing and final guidance is expected to be published in

March, subject to appeals and further consultation.

On 16 November, NICE published draft recommendations for COVID-19 treatments.

Further information can be found at nice.org.uk/news/article/ni...

treatments-for-covid-19-in-draft-guidance.

NHS treatment choices should continue to be guided by the published clinical

commissioning policies until finalised guidance is published, upon which the NHS will be

required to make recommended treatments available to patients.

In addition to NICE’s MTA of COVID-19 therapeutic treatment, it is conducting a single

technology appraisal of Evusheld as a pro-exposure prophylactic. The department and

NICE have agreed to expedite this process by two months, and publication is expected

this month. If NICE recommends its use as a pre-exposure prophylactic that is clinically

and cost-effective, the NHS will make Evusheld available as appropriate.

If patients are concerned about access to COVID-19 treatments, they should speak to their

clinician in the first instance.

I hope this reply is helpful.

Yours sincerely,

WILL QUINCE MP

MINISTER OF STATE

Just thought you should all know!!

Roger

[Fran57]

Roger, thank you SO much for keeping us informed.

So, in between counting the costs (mentioned a fair bit), they might be looking at if they can provide treatment and/ or prophylactic drugs.

I shall look forward to the results of the various studies and appraisals; I have a feeling we may already know the probable outcome.

Thank you again.

Stay safe,

Fran 😷

[RogerPinner in reply to Fran57]

I think we are on the same page Fran, Roger

[mrsjsmith]

Thank you Roger,

Perhaps you should let Will Quince ( is he not a Shakespeare character ) know that neither of the links in his reply work. Doesn’t bode well for anything else ! Obviously his reply isn’t helpful.

Regards

Colette

[CLLerinOz Administrator Volunteer in reply to mrsjsmith]

Hi Colette,

I think the full internet addresses were provided by the MP concerned but weren't captured properly, perhaps when they were cut and pasted into HU. I've done the same myself and now know that it's necessary to open a shortened link and copy the full address before including it in a post/reply here.

We briefly covered the 16 November NICE draft recommendations in our pinned post about SARS- CoV-2/Covid-19 last year:

healthunlocked.com/cllsuppo...

For a direct link to the document concerned, visit: nice.org.uk/news/article/ni...

This is the other 'missing link': gov.uk/government/publicati...

CLLerinOz

[mrsjsmith in reply to CLLerinOz]

Thank you.

Colette

[annmcgowan]

Hi thank you for the post it will be interesting to read the results but as Fran said I think we probably do know the outcome and it’s unlikely to be good.

I too have written to my MP who raised the question of evusheld in the house in my behalf to no avail. They just keep kicking the can down the road then make excuses about why they are not going to provide prophylactics or treatments for the immunosuppressed. It’s a disgrace in my opinion.

Ann

[HopeME]

Hi Roger: Most of the Covid treatments have been withdrawn in the US, too. It seems the only Covid treatment that is heavily relied upon in the US now is Paxlovid. Is Paxlovid available in the UK? I’m not sure what the answer is but there doesn’t seem to be any magic bullets. I’ve avoided Covid for 3- years. I’m hoping to avoid it for a couple more months and get to the spring when disease prevalence will hopefully fall.

Best,

Mark

[mrsjsmith in reply to HopeME]

Yes it is Mark 🤞 but anyone on Ibrutinib has to be careful. My consultant didn’t want me to stop but drop down to 140gm.

Like you I have avoided but so bored being careful.

Colette

[Mijoed in reply to mrsjsmith]

You may know this already but this is the reason you need to be careful if taking Paxlovid. Prior to prescribing, the doctor will want to know what other drugs you are taking, and this is not limited to Ibrutinib.

Paxlovid is made up of two drugs…….Nirmatrelvir and Ritonavir.

Nirmatrelvir is responsible for the antiviral activity of the medication against SARS-CoV-2 while Ritonavir works by inhibiting the metabolism of nirmatrelvir and thereby strengthening its activity.

Ritonavir has a similar affect on other drugs, leading to higher and possibly dangerous blood concentrations. Hence the need to reduces the dosage of Ibrutinib.

[mrsjsmith in reply to Mijoed]

Thank you yes I did,

but also my consultant mentioned my bad markers ( lucky me ) as a reason he didn’t want me to stop completely.

Colette

[HopeME in reply to mrsjsmith]

Hello Colette:

I understand your plight. I’m in a worse position than you in that my current treatment is V + O and I have kids that go to school every day so I’m constantly exposed. In an event, my point is that treatments like Evushld don’t appear to work any longer and they aren’t being prescribed in the US so it isn’t only in the UK. Based upon this, folks shouldn’t be too critical of the NHS for not purchasing these treatments.

Best,

Mark

[mrsjsmith in reply to HopeME]

Thanks Mark,

I am only critical of one area of the NHS and that is there are far too many middle managers that are a complete and utter waste of money. Everyone in clinical work I see are great. Briefly one example - one of the patients groups I am involved with was sent an updated site map for comment from estates. As a patient is it my job to point out they have left off the outpatients pharmacy.

Colette

[HopeME in reply to mrsjsmith]

I read the following sobering article about the NHS in the WSJ. There is a lot going on. The NHS used to be the envy of the world for managed healthcare but demographics and Covid have really done a number on the system. The US system has similar problems. I’m uncertain what the answer is but it will be painful.

wsj.com/articles/nhs-uk-nat.... I hope you can get through the pay wall. Some articles are open and others aren’t.

Best,

Mark

[mrsjsmith in reply to HopeME]

Thanks Mark,

I have a friend who’s husband works for the WSJ so I will see if she can locate.

Agreed I don’t know the answer but what is happening at the moment isn’t good. I don’t think some people in the U.K. appreciate what we have and don’t turn up for appointments or turn up at ED for very minor problems and then become abusive if not seen immediately.

Colette

[HopeME in reply to mrsjsmith]

The article is dated 2/6/23.

Thanks

Mark

[mrsjsmith in reply to HopeME]

Thanks Mark,

My friend has already emailed it to me, I just haven’t had the nerve to read it yet. I am sure it will make depressing reading.

Colette

[fayeander]

My concern is not the coverage of the Covid Vaccines or the expense at all…my concern is the damage the Pfizer Vaccines and Booster have created internally and externally to my body. After taking the Pfizer products I have had my body destroyed…fevers constantly, skin rashes and peeling, asthma has gotten worse, 25 years since hospitalized with asthma and now have spent two different stays with severe asthma. In remission for CLL, WBC Elementary, RBC low, swollen spleen, swollen liver, muscle disease, now walking with a cane. Fatigue much worse than when leukemia was active. Weak. Legs too weak to support me. Immune system, autoimmune system shot to hell and back!Hospitalized, doctor after doctors and there’s too much wrong for any one doctor to diagnose. I feel like my body is dying around me. Expense is killing me!

[stevesmith1964]

Hi

As an Immunocompromised individual on monthly IVIG, daily antivirals and antibiotics, I think the response is more than reasonable. Having worked with NICE over my career they are very data driven and there has to be a clear cost /benefit for the use of public money. For example Evusheld is not cost effective for a mass prophylactic roll out to 500000, however it or a newer treatment to a smaller cohort say those with other life threatening comorbidities. I live a full pre CLL and pre Covid lifestyle and i am in that 500000, the money should be spent on staff and training not unproven prophylactic to 500000 people.

[RogerPinner]

Steve, your posts have always stressed your positivity and unwillingness to change your lifestyle. It's working for you. My brother-in-law who was also one of the 500,000, took a similar view ,and died last year; cause of death according to the death certificate was Covid.

We all have reasons for behaving as we do, some by choice, some by necessity. All we are asking for is the same level of protection that the government thought appropriate for the rest of the population when it introduced its vaccine rollout.

Its a spurious argument to suggest it is either protecting us or paying NHS and care staff a proper wage. I was taught as a kid that prevention is better than cure. Most of the time, particularly in connection with health, it is also cheaper.

Roger

[Fran57 in reply to RogerPinner]

Absolutely Roger, prevention has to be better than (and cheaper than) cure!

Stay safe,

Fran 😷

[Mijoed]

Evusheld (AZD7442), as originally approved by NICE, is withdrawn from use in the US and other countries because it is not effective against the latest strains of Covid.

"The US Food and Drug Administration has withdrawn its emergency use authorisation for the covid-19 antibody drug Evusheld, citing data showing that the treatment is unlikely to be effective against the XBB.1.5 subvariant of omicron now dominant in the United States.1 Feb 2023"

The good news is that there is the SUPERNOVA trial starting which will evaluate a second version of Evusheld (AZD3152) in immune impaired.

For anyone wanting to know where they got the name SUPERNOVA….

Study Understanding Pre-Exposure pRophylaxis of NOVel Antibodies.

[Lady_Lymington]

Hi Roger. I totally agree with your comments. I have been shielding for nigh on 3 years and will continue to do so(unlike some on this site). In the CLL support newsletter issued on Tuesday, apparently the Government is NOT going to buy Evusheld.

Jackie

[RogerPinner in reply to Lady_Lymington]

Jackie, regrettably Evusheld is now considered passee as it is generally not effective against the newest variants of the covid virus. But that doesn't excuse the government not approving its use last year when it was more effective and when we could have had a 'holiday' from shielding.

Roger

[Lady_Lymington in reply to RogerPinner]

Absolutely Roger I totally agree with you. I guess we have to wait for AstraZeneca Evusheld mark2 clinical trial which is due completion October 2024. Then we have to wait for N.I.C.E. to deliberate……..so we are potentially locked away until summer 2025????