Evusheld petition - urgent - signatures needed - CLL Support

CLL Support

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Evusheld petition - urgent - signatures needed

Tinksie profile image
19 Replies

Please sign this petition for Evusheld if you haven’t already bloodcanceruncensored.com/s...

For those with little or no response to covid vaccines (many with CLL or other immunosuppressed) this is a game changer. It’s now approved but the government are still not purchasing any. Please sign.

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Tinksie profile image
Tinksie
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19 Replies
stevesmith1964 profile image
stevesmith1964

Technically it's not the governments decision. As far as I can tell Evusheld hasn't been approved by NICE , it is either under review or NICE have concluded the cost / health benefit now there are other treatments doesn't justify it be provided on the NHS. I suspect once the cost and availability increases then NICE may look at it again.

Tinksie profile image
Tinksie in reply to stevesmith1964

It is the MHRA that approves the use of drugs - NICE provides guidelines to clinicians and on financial implications (but the Royal College of Pathologists notes that ‘NICE appraisals of new drugs are performed long after the drugs have been licensed and extensively used, firstly in clinical studies and then on expanded access’. The Government have said they can’t talk about their negotiations with AstraZenica because they’re ‘commercially sensitive’. AstraZenica have refuted this and said they have yet to be in negotiations and there is no reason to consider it commercially sensitive. There is availability. America have just ordered a considerable amount for their citizens who need it. Trials have shown it keeps CEV unprotected people out of hospital, that would be much cheaper than the cost of the injection. They just need someone in the Government to speak up for us.

stevesmith1964 profile image
stevesmith1964 in reply to Tinksie

I understand the process having been in the healthcare space for years. From my experience trusts tend not use drugs not given NICE green light. I don't know the cost of Evusheld, but I suspect its expensive thus I suspect if NICE do approve it the use may have limited scope and not mass role out. ? Type of CLL and stage would my quess as that criteria has been used before for other drugs.

Tinksie profile image
Tinksie in reply to stevesmith1964

Well, the MHRA have approved, so I shall just hope and pray that the Government see sense for once and have enough compassion and logic to see that it will save lives as well as money! As well as giving quality of life back to thousands who no longer feel safe to leave their homes.

stevesmith1964 profile image
stevesmith1964 in reply to Tinksie

I totally understand, having had Covid19 3 times while I shielded and isolated I have now gone and back living my pre CLL pre convid life.

Tinksie profile image
Tinksie in reply to stevesmith1964

Glad you were ok - that is bad luck! My Dad is the one with CLL. He does have some antibodies after testing but is still being ultra careful. I have Lupus and am on 3 immunosuppressants and after 4 vaccines have no antibodies. I am therefore still shielding sadly.

stevesmith1964 profile image
stevesmith1964 in reply to Tinksie

I think have a 4 and 2 Yr olds means I will continue to have covid infections as its rife at school and nursery.... I am retired and a full time dad. Even after 3 covid infections and 4 jabs I still have no antibodies, so I assume my T cells are doing some work , I was only hospitalised with delta and that was just a precaution by my consultant to give me an antibody infusion... I hospitalised because Covid told my Platelets Down thus concern of a PE. Keep safe.

Tinksie profile image
Tinksie in reply to stevesmith1964

Bless you. That’s tough. I have three kids, but homeschooling when infections are high. Have managed to avoid it so far but I don’t know for how much longer. Glad you came out of it ok. Just so frustrating when the government push everything back to normal but don’t provide the same level of protection for everyone when they could.

stevesmith1964 profile image
stevesmith1964 in reply to Tinksie

Having worked in healthcare both in and with the NHS , I did a lot of work on health economics so can understand why the case for evusheld could be a difficult one. I was ultra careful but I have come to the conclusion that every will get and covid is here to stay .... I know i will come out of remission at some point as I started at stage 4, but life is for living so I am.

skipro profile image
skipro in reply to stevesmith1964

Wow, I keep reading that the mortality rate is 37%-87% for CLL patients with Covid19,

I am impressed that you did so well.

Do you have access to Evusheld? I had NO response to 4 Pfizer and 1 Moderna Vacc. but a huge response, off the charts with Evusheld.

Mike

stevesmith1964 profile image
stevesmith1964 in reply to skipro

HiMy first covid infection was 4 months after diagnosis at stage 4 during my Obinatuzamab cycles... paracetamol sorted that. 2nd was delta 6 months ago was a bit rough although my SATs were 98% my consultant arranged for antibody infusion on day 10. 3rd was in Jan , omicron, I declined antivirals and just used paracetamol. Had all my jabs, still no antibodies

Tinksie profile image
Tinksie in reply to stevesmith1964

As you say Steve, maybe it’s T cells working for you, or maybe you’re just one of the lucky ones. I’d still very much like the odds more in our favour by having Evusheld. The statistics and research shown in the trial show it is invaluable in protecting those who are not protected by vaccines. A few of us maybe lucky but many of us won’t be.

stevesmith1964 profile image
stevesmith1964 in reply to Tinksie

Totally understand. I am sure NICE will make the right decision. Obviously its a difficult one to balance probability of an individual against the limited pot of cash.

MickUK profile image
MickUK in reply to stevesmith1964

Sadly, the limited pot of cash available has been greatly reduced by the government waste, fraudulent claims and dodgy costly contracts amounting to billions of pounds over the course of this pandemic.

Most of us with blood cancer have produced little or no antibodies after 3, 4 or 5 vaccinations, so some cash spent on giving us a chance to live as normal a life as those with a healthy immune system does not seem to much to ask. That is without taking into account the cost to the NHS of treating us if/when we contract this disease.

Tinksie profile image
Tinksie in reply to MickUK

Mick - I again feel exactly the same

skipro profile image
skipro in reply to Tinksie

Hi, I've heard that antibody response was connected or proportional to T Cell protection.

Sounds like Steve must have had T-cells despite no antibodies and the study I was looking at is not completely accurate?

Still, with no antibodies after my 5 jabs, I am nervous about how I would do I if I get Covid.

Tinksie profile image
Tinksie in reply to skipro

I feel the same.

Fran57 profile image
Fran57

Thank you for the reminder.We have already signed.

Stay safe,

Fran 😷

hopefulbunny profile image
hopefulbunny

Done 👍

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