Please sign and share my petition to UK government asking them to reverse their decision not to fund life saving Evusheld for blood cancer patients and other immunocompromised. They cancelled the pre order unlike vaccines we have no doses being offered at all even tho it’s licensed!! Please also share and ask all your friends and family. We need at least 10K signatures. Fund Evusheld the preventative COVID19 antibody for immunocompromised - Petitions
Signed and shared. I hadn’t heard the govt had decided not to allow us to have it. That’s a real blow.
Also signed and shared. This news is new to me too.
Well they didn’t pre order like they did the vaccines. It’s possible they may stil decide to order some soon. But the petition will help. We’ve got to 400 signatures. Only 9600 to go and they are forced to reply to us! Let’s share wirh our friends and family too.
I’ve signed the petition.
Weve got to 1000 in less than 24 hours!
Have signed petition, thank you for making us aware of this. Don’t feel any safer going out now than I did 2 years ago. April the 1st fast approaching no information on lateral flow tests for us, feel like the forgotten ones in all this.
Over 2,000 now!!! Please share with family, friends and MPs
Done was thinking of starting myself. Fantastic
Excellent Adrian . We are so few !! We have been forgotten . Please get all friends and family to sign .
Great work Adrian .
I have also signed and sent on to my friends and family. Would it be good to try to alert some of the other charities so they could also signpost it. There are a lot of immunosuppressed people out there!
Hi @Adrian - There has not yet been confirmation about the quantity of Evusheld the Government is looking to purchase, and importantly any decision about who may be eligible for this treatment. We anticipate any future roll out will be focussed on those at the highest risk from covid who we’ve seen have the poorest outcomes.
As per our blog Evusheld Covid antibody treatment - what you need to know | Blood Cancer UK, we really welcome the MHRA’s approval of Evusheld, however there’s still important questions that need to be answered. For example, we have not yet seen real-world data (though it’s something the MHRA is monitoring), on how much protection it gives against Omicron and the Omicron BA.2 subvariant, or for how long. This will also need to be monitored against any future variants that might become prominent.
Whilst we aren’t involved with this specific petition, we are focused on pushing for the Government to communicate their plan around preventative covid treatments as soon as possible. While we welcome others continuing to keep this pressure up, we want to ensure our asks remain focussed. Ourselves and 17 other charities have produced this brief for the government, which sets out 5 tests the plan must pass to make sure people at highest risk from COVID-19 are well supported to live with COVID-19 now and into the future -
the 5 tests are
- Directly address the concerns of people at highest risk and commit to improve communication with them 2
- Smooth, timely access to COVID-19 treatments
- Lateral flow tests remain free 1
- Improve employment protection and support
- Set out a plan for the use of preventative COVID-19 treatments and prioritise further research into treatments and vaccines 1
We will continue to share both the data derived from our vaccine efficacy research, along with the issues and concerns of the blood cancer community, with the decision makers within the government, and we will keep the blood cancer community updated as we learn more.
Thanks for all you do Alice. The attitude of the government to this life saving treatment is totally different to their attitude to vaccines. They wanted to be world leading and bought loads of the doses even before we knew if they would work. Yet they cancelled their pre-order for this. It just adds to the growing sense of us being abandoned by the government and they haven’t even had the decency to give a proper public explanation of why our lives matter so much less to them. Increasingly I am seeing people on other forums say they believe they actually WANT us to die so we will cost them less money. There seems to be very little information coming out about how many of us are currently in ITU and/or dying still and with the problems accessing antivirals too this is a very bleak time for many of us. Your work behind the scenes and also on the support line to help us not feel entirely abandoned is much appreciated.
Thanks Ann, If you are able to alert some of the other charities that would be wonderful.
Hi @Adrian this sense of abandonment you and others speak of sounds so distressing - we know it’s still a really tough and uncertain time for many people in our community and that is totally understandable. Please be assured we will continue to push the government for answers to the questions we have around Evusheld, that we talk through in the above blog.
May I ask Adrian, where you came across the information that the government cancelled their pre-order, as this isn’t our understanding of the situation from our conversations with the government.
When the MHRA granted the conditional marketing authorisation for Evusheld, the trial data was from before the emergence of the Omicron variant. The UK Health Security Agency (UKHSA) is currently carrying out further testing on the treatment’s effectiveness against the Omicron variant. Once completed, these results will help inform any decisions on next steps for this treatment, including procurement.
Take care, Alice
It was reported by Bloomberg back in May 2021, here is the link to the article Bloomberg - Are you a robot? (ignore the silly link title, when you click on it it takes you to the right webpage)
Firstly thank you for everything that BCUK is doing to help support our community and your discussions with Government.
I think my frustration as a blood cancer patient is watching at least 16 other countries, which include the US, France, Australia and Israel already providing Evusheld to their immunocompromised patient communities (just yesterday I saw New Zealand announce they have now out in an order for Evusheld). Yes Evusheld appears somewhat less effective against Omicron than it did in the Provent trials but in vivo studies ( EVUSHELD™ long-acting antibody combination retains neutralizing activity against Omicron variants including BA.2 in new independent studies ) it still seems to neutralise Onicron, especially at 600mg dosing levels (The US for example doubled the dosage to improve the effectiveness). The U.K. HSA seem to be waiting for the perfect data set to support moving ahead ie to be risk averse in the extreme, when for some in the blood cancer patient community who have shielded for two years with zero antibodies, our view is “any protection is better than none, just get on with it “. We know from Provent that the treatment is safe, if it turns out to be only 50% effective , that is 50% few blood cancer patient getting seriously ill from Covid if they try and live more normal lives. I’d be more than happy to get Evusheld, hopefully it will be really effective, but if it isn’t then we rely on the antivirals/infusions. the HSA just doesn’t seem to have the sense of urgency we want them to have about on this. Just some communications from them on their potential timeline, what data they are waiting on, that in itself would be hugely helpful. The U.K. will also be at the back of the procurement queue due to their delays on what is a limited worldwide supply of Evusheld. We are definitely not “world leading” on this. And it just adds to our frustration of feeling forgotten and left behind . Off my soapbox now.
Great post Carole wish I could word it as well as you.
Hi Carole. Brilliant post, couldnt agree more.Think we’re quite simply talking pounds shillings and pence here. The government is keen to offer a 5th vaccine even though many with blood cancer will have received poor immunity from them. Don’t know the cost of Evushield but sure the vaccine is far cheaper. The government is stalling, our lives have a price tag, sadly we appear to have very little worth. I do believe if many of us die it will be cost effective for the NHS budget.
Hi @annhayes, I am really sorry I missed your post, a great big welcome to our forum.
Have you got blood cancer or someone near to you, I really look forward to hearing more about you,
Look after yourself