Evusheld (prophylactic COVID-19 treatment) approv... - LUPUS UK

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Evusheld (prophylactic COVID-19 treatment) approved by MHRA

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK
30 Replies

We're very pleased to share that the MHRA has approved evusheld, a prophylactic treatment for COVID-19. This treatment is for adults who are unlikely to mount an immune response from COVID-19 vaccination or for whom vaccination is not recommended.

At this time, we do not yet know when this treatment will be rolled out, the eligibility criteria or how people will be identified and invited for treatment. We will provide more information as it becomes available.

gov.uk/government/news/evus...

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Paul_Howard
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30 Replies
sunshine16 profile image
sunshine16

Thanks Paul and LUPUS UK for keeping us always well informed and the amazing work you all do

Krazykat26 profile image
Krazykat26

Thanks Paul. It's great to hear some good news for a change!! 🌈😽😽Xx

PMRpro profile image
PMRpro in reply to Krazykat26

Must something else coming after the Iranian trio coming home!

Krazykat26 profile image
Krazykat26 in reply to PMRpro

Sorry Pro 🤗I've got no idea what you mean 😆🌈😽😽xx

PMRpro profile image
PMRpro in reply to Krazykat26

Nazaneen what's her name who has been in prison in Iran for 6 years got back to the UK at 1am. Two others are coming too

Krazykat26 profile image
Krazykat26 in reply to PMRpro

I avoid the news most of the time so I'm usually pretty clueless but I think I have an idea now 😆🌈😽😽xx

PMRpro profile image
PMRpro in reply to Krazykat26

Since Putin and his shenanigans I rarely have the TV on apart for an hour while I'm drinking tea in bed in the morning - and reading something infinitely better but it means I catch the important UK stuff. The rest I get from our local news (Italian, Ladin and German) in the evening. Unfortunately, BoJo gets on that too at times but hey ho ;)

CSLO profile image
CSLO

Thanks Paul!

Treetop33 profile image
Treetop33

I'm so pleased for people who will get this - it has been such a worry.

Krazykat26 profile image
Krazykat26 in reply to Treetop33

Totally agree!! 🤗🌈😽😽Xx

vernmary profile image
vernmary

I have ITP and I am very interested in this treatment. Please keep us posted...Thanks for the news...

vernmary profile image
vernmary

Hi all...Well, yesterday I received Evusheld in two doses. #1 injection was tixagevimab and cligavimab pre-mixed and given into the hip muscle. I sat for an hour after to make certain there were no allergies or other problems. This morning, I am fine. Through the years I have been diagnosed with several auto-immune diseases beginning with Lupus, (skin biopsy) RA, Hashimoto, (85% of thyroid removed), and now Scleroderma. Treatments over the years have been many...Some have been taken off the shelf. Those I felt worked were 5 years of Gold Therapy, (was in a study) and Plaquenil...for 5 years. By going that route, I escaped the terrible joint damage one experiences with RA. Then...3 years ago or so, I was diagnosed with ITP. Massive doses of Predisone tamped this disease back to normal. All are connected...so if you have an auto-immune disorder, be prepared to fight a few more. I am 84 now and the last half of my life has been with this disease. Also, I want to share that my mother was diagnosed in the 70s and nearly died from Lupus before it was diagnosed. She was saved with Predisone. Now, hopefully, I can live the rest of my life without another auto-immune disease added to the pile. It reminds me of an evergreen tree. starting at the top, one is the star, then it goes down to the last branches below and each one is another disorder. Just try to treat your body with respect and healthy by right diet, plenty of sleep, and stay away from stress.

My repercussions from all these disorders have are not good, but I am able to control them with meds and many doctor visits. I have heart conditions, (I wear a pacemaker for sick sinus node, I'm in constant AFib and have been for 6 years but am on Eliquis for blood thinner Stage 3 kidney disease, but at last check, my GFR is at 59 and 60 and above is normal. So, what I am doing is clearly a good thing. Diet, rest, and my exercise needs to be upped after a long winter. I am tired due to the AFib, but nothing I can't live with. Just take one day at a time and rest assured, you will beat this or at least learn to live with it. Now, I hope these injections of Evusheld will be my answer to letting me go out in the public and enjoy living again. Yes, you will be okay. Don't let Autoimmune diseases get you down. You got this!!!

Krazykat26 profile image
Krazykat26 in reply to vernmary

Oh my vernmary what an inspirational lady you are!! 🤗 I'm not sure where you are in the world but here in the UK Evusheld has just been approved and we're waiting to see how they roll it out.Thank you sooo much for replying to this thread to share your experience.

If you posted this as a new post it will be seen by us all..only if you're up for it though.

Big respect lady and I hope you'll get back 'out there' to enjoy life real soon!!

Love your analogy about the branches of the evergreen tree too. 💜🌈😽😽Xx

vernmary profile image
vernmary in reply to Krazykat26

Thank you...I live in the midwest, Iowa, in the USA....My injections were yesterday...Today...no symptoms at all. I had bugged my hematologist for months for anything to help me to return to society as I had been sequestered for the past two years, in my apartment. I have some living to do before I leave this earth. So when he called me to see if I would like to do this...my reply was YES!..Evusheld isn't FDA approved in the US either. However, the FDA has issued an emergency use authorization (EUA) to make Evusheld available during the Covid 19 pandemic. As you already know...I fell into that category since I am not able to have a regular Covid 19 vaccination. If this helps anyone who reads it, I am happy. And I hope you will be able to participate in a trial or (EUA) soon. Best wishes to you all who suffer from any auto-immune disorders.

happytulip profile image
happytulip

But it's not going to be available in the UK as I understand it. Would you please be able to update us when you can please? I can't make sense of their reasoning. AZ says it acts well against Omicron. Thanks.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to happytulip

Hi happytulip ,

I think there is some misunderstanding about announcements made last week. Apparently the Government said that they will not be making Evusheld available before NICE have completed an evaluation/appraisal.

NICE was accepting stakeholder registration and comments on the draft scope for an appraisal up until Friday 12th August. LUPUS UK has submitted a comprehensive form. We have recommended that emergency approval is given to Evusheld (like the post-exposure COVID-19 treatments) and any appraisal should be fast-tracked.

The Government have been dragging their heels on this since the treatment was authorised by the MHRA in March 2022. The fact that NICE is planning to appraise the treatment has fallen into their hands because they can use it as an excuse for further postponing access.

happytulip profile image
happytulip in reply to Paul_Howard

Thanks Paul, this is where I got my info from. I have to say it's all a bit confusing, or is that just me, I'm not sure. Maybe it's the way that it's being reported in the media? It just feelsike the people who have been isolating for so long are expected to isolate for even longer. It's not sustainable and it has a serious effect on physical and mental health. I'd challenge even the most robust and resilient people to be living like this since first lockdown. And if we do go out mask wearing and distancing is well in the past, yet 1 in 25 currently have covid.

Oh well, I suppose we'll have to see what NICE say. Thank you for the hard work and lobbying.

bbc.co.uk/news/health-62516...

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to happytulip

Thanks for sharing this article. We are incredibly disappointed by this decision and will continue to challenge it with colleagues in other charities. I don't understand why the government have been so hesitant to allow access to this treatment but they have essentially passed the buck to NICE now.

I really hope that NICE accepts the comments from patient groups and ensures a decision is reached as quickly as possible. As you say, it is completely unfair for people at high risk from COVID-19 to be expected to continue shielding because all other precautions have been lifted.

happytulip profile image
happytulip in reply to Paul_Howard

In my opinion it clearly shows the value put on the lives of those with disabilities. I can only suggest that people take action my writing to their MPs.

It's also has a detriment effect on the economy as plenty of people would like to go out to work but have had it to be deemed to higher risk by their medical team. Without the protection of Evusheld then what assurance do they have to know that they will be kept safe?

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to happytulip

It is hard to see it any other way! It clearly is not a priority for this government.

It would be wise to continue generating support from MPs and keeping up pressure on the government to reverse this decision.

Krazykat26 profile image
Krazykat26

Yes I've just learnt that the UK are refusing to fund it for us folk. I've spent much of the morning crying coz I've had too much right now!! Haven't seen grandchildren for 2yrs in person..they are growing up fast and now it's looking that I am literally trapped in my own home. I still can't get a car from Motability and this latest news has pushed me over the edge. I have read that Lupus UK along with other charities have been lobbying but I too would like an update 🌈😽😽xx

Wendy39 profile image
Wendy39 in reply to Krazykat26

HelloI’m so sorry to be reading this.

Heart goes out to you and everyone else in this situation. It’s really so unfair.

I have looked for the latest update and this is all I could find, from the start of August and obviously the announcement that the U.K. isn’t purchasing this has been made.

I am sure that Paul or Chanpreet will be updating here when they’re back in the office.

This does show the charities who are campaigning for this drug to be available in the U.K.

Best wishes

Wendy

Charities and bodies supporting campaign for access to Evusheld in the U.K.
happytulip profile image
happytulip in reply to Wendy39

bbc.co.uk/news/health-62516...

This was on the BBC news over the weekend x

Wendy39 profile image
Wendy39 in reply to Krazykat26

Second page of letter

2nd page
Wendy39 profile image
Wendy39 in reply to Krazykat26

The LUPUS UK post which explains a little more.

LUPUS U.K. social media post detailing who is involved in campaigning for access to Evush
Krazykat26 profile image
Krazykat26 in reply to Wendy39

Thank you Wendy 🤗💜🌈😽😽xx

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Krazykat26

Hi Krazykat26 ,

I think there is some misunderstanding about comments form the Government made last week - a lot of these seem to be rumours, with no official announcement or position published online. Apparently the Government said that they will not be making Evusheld available before NICE have completed an evaluation/appraisal.

NICE was accepting stakeholder registration and comments on the draft scope for an appraisal up until Friday 12th August. LUPUS UK has submitted a comprehensive form. We have recommended that emergency approval is given to Evusheld (like the post-exposure COVID-19 treatments) and any appraisal should be fast-tracked.

The Government have been dragging their heels on this since the treatment was authorised by the MHRA in March 2022. The fact that NICE is planning to appraise the treatment has fallen into their hands because they can use it as an excuse for further postponing access.

Krazykat26 profile image
Krazykat26 in reply to Paul_Howard

Thank you Paul 🤗I give thanks everyday for Lupus UK..where we would be without u keeping us in the loop? However this news from the BBC still means that I'll be spending my third Xmas isolated from my family. We are having to go for covid jabs every three months now and just reading on this forum how many of us despite following all the guidelines are contracting Covid ..it's frightening! This winter will see another upsurge..the NHS is overwhelmed as it is. I had been pinning my hopes on Evusheld n now it looks as if it's not gonna happen this year. 😔

Thank you again for everything you're doing n if I have to sign another petition I will gladly do so coz right now I feel that all of us within this category are considered expendable n that doesn't help with ones mental health 💜🌈😽😽xx

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Krazykat26

Hi Krazykat26 ,

Hopefully NICE will listen to all the feedback from patient organisations. If they do, they may authorise emergency access and fast-track the appraisal process. The coalition of charities will continue to do what we can for people like yourself. We want to bring an end to these inequities.

KayHimm profile image
KayHimm in reply to Krazykat26

KK - that is heart-breaking that you haven’t been able to see your grandchildren. And to know there is an effective medication out there to prevent Covid In immunocompromised people is maddening.

Have you thought about asking your rheumatologist or GP to test your antibody status? I think both our countries recommend against it but individual doctors feel differently. There was a NHS lupus patient on the forum whose rheumatologist felt it necessary to test for antibody levels.

It could give you a bit of security to know you possibly mounted a good response. I got a Medscape email stating good news overall in the US in treating Covid in systemic autoimmune patients. Likely true in most countries.

Anyway, just a thought. The psychological effects of long-term isolation can’t be good either.

😘😘 Kay

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