Hi, new to the forum. My wife has ET and Chronic lymphocytic leukaemia (CLL) and is currently on Hydroxicarbamide, the doctors say the situation can be managed, so fingers crossed there.
My question is concerning Eversheld the new injection that looks good for preventing Covid infection. As I am sure it has been discussed on here in other posts we are waiting for NICE to approve it for use in the NHS. However this also seems to stop it being available privately, does anyone know anything about this. Also we would be interested to know if anyone has any experience or knowledge of jetting off for a holiday to say the USA or even Spain and getting it done there?
My wife has been suffering with Covid anxiety ever since she was diagnosed (understandably) so we would love to get this treatment even if it costs a bit.
A great big welcome to our forum @Pie58 and I can understand your and your wife’s anxiety.
I am hoping that you and your wife are up to date with your Covid vaccines.
Your wife might want to check with her CNS (Clinical Nurse Specialist), Consultant or GP to ask what she should do if she were to test positive for Covid.
As for jetting off abroad I await to hear if anyone has done so.
I am copying your post to Blood Cancer UK for up to date information @BloodCancerUK Look after yourselves
Hi Erica The Times has published letters yesterday and today about the government’s refusal to buy it. Obviously the letters’ editor is sympathetic to the matter but is Blood Cancer UK in touch with their health correspondent in the hope he/she might do an investigation (and perhaps a prominent article) into what is quite obviously a scandalous situation? It seems to have been kicked into the long grass until April and we have the constant worry of the winter with covid and respiratory illnesses forecast to be bad.
Personally at clinics I find mask wearing very casual despite signs. From observation the patients are wearing them but accompanying friends/relations either not at all or dangling round their necks.
I understood the drug is not available privately in the UK.
I will copy you post to @BloodCancerUK for you @Juliet, look after yourself and thanks for your very helpful response to @Pie58
Yes we saw the letter in the Times. Also i emailed my MP re this situation this morning and unusually had a phone call back within 4 hours from his aide to say they have had several enquiries about this and are waiting for a response from the D of H. I would suggest we all send an email to MP’s to try and get this moving.
I have also made enquiries via a relative of mine in the USA about getting the jab there as he is a senior hospital manager. (I appreciate not everyone can jump on a plane to the states and pay for a jab before someone shoots me down) When it comes down to it if it means having an extra holiday to get the jab count me in especially as we havent had a holiday for nearly three years!
You are working well @Pie58
If you have an opportunity of going to the USA, having a long awaited holiday, seeing a relative and getting Eversheld both of you, go for it I say, sounds good to me.
That is an impressively quick response. I wrote to my MP in the summer using Blood Cancer UK’s suggested template. It took 6/7 weeks for an anodyne reply which just quoted the government decision and with a suggestion I wrote to my MSP - I’m in Scotland . The Scottish Medical Consortium decides these matters not NICE but my impression is in these matters that that we follow the English decisions.
Hi @Pie58, welcome, we’re glad you found us. As @Erica has said, it’s completely understandable feel anxiety about Covid. Please reach out to our Support Line if you’d like to talk anything through - you can call us in confidence on 0808 2080 888, or send us an email.
You can read the latest on Evusheld here: What's the latest on Evusheld? | Blood Cancer UK. We are asking the Government to do two things: (1) to buy Evusheld and make it available on the NHS and (2) to publish the analyses they conducted that led to their decision not to buy it until the NICE appraisal is finished.
@Juliet - great point about media coverage. This is something we’ve been working hard on! Since the announcement that Evusheld would not be made available, we’ve been featured on Radio 4’s Today Programme who broke the story, BBC North West evening news and the Victoria Derbyshire programme, and we’ve been quoted in BBC News, the Guardian, the Daily Mail, POLITICO, and iNews. We’re in close contact with officials in the Department of Health to gather more insight into how they made the decision not to buy Evusheld, and why. We’re also putting pressure on officials by sending another letter to the Secretary of State, outlining the impact this decision has and will have on our community. @Pie58, it’s really heartening to hear about your MP’s quick response.
Evusheld isn’t available to buy privately in the UK, and you’re far from alone in wondering whether the right thing to do is to go abroad to access it. We ran an ‘Ask the Experts’ event last month with people working in oncology, infectious diseases, haematology and haemato-oncology.
The question of accessing Evusheld privately/abroad came up, and you can hear our panel’s response here: Ask The Experts - Covid vaccine efficacy & treatments - what do we know so far? - YouTube
I hpoe this has been helpful, but if you have any questions please do reach out to us.
Thank you - it is so reassuring to hear how hard you are all beavering away on this problem for us. We live in our own lonely bubbles still with covid continuing to cause anxiety and the support of Blood Cancer UK is fantastic.
Hi Juliet & Ellie, I had a donor stem cell transplant 32 months ago, complicated by skin Graft-versus-host-disease which has been controlled. I had no antibody response to 5 vaccinations, have just had my 6th and keeping fingers crossed for some response this time. I have been following the Evusheld saga very closely from when it was first approved in the US and have been horrified by our government’s delaying tactics. You (Juliet) might be interested in the campaign group that has been working very hard to get the government’s decision to delay until after NICE reports (next May) reversed. If you look on Facebook for Evusheld for the UK you’ll be able to access the closed group. If you use twitter, search for @evusheld4theuk and you’ll find lots of information. Everyone in the group is very friendly and supportive. There is no chance of getting Evusheld privately as the government has not yet bought any stock from AstraZeneca, and if/when they do I’m sure the policy will be the same as with the Covid vaccines, that they are not available privately. Anecdotally I’ve heard of someone who went to the US, but I guess few of us could afford it, and also few of us would want to take the risk of travelling given that most of us are still either fully shielding, or shielding as much as possible. Hope that helps 
Hi Diana
You have certainly been through an ordeal and I’m glad things are improving.
Many thanks for those links. I think what annoyed me most was reading they’d ordered it in March and then as the months went by it became clear we weren’t going to get it and then of course the order was cancelled. Also as you say getting it privately has always clearly not been on the cards.
I’ve also just had my 6th vaccine but have no idea if any of them have given me any protection - just keep hoping. As even a family member’s simple cold passed on to me inevitably ends up with me in hospital on intravenous antibiotics, trips abroad, like you, do not appeal. Just the thought of standing in security queues in the airport makes me shudder!
Hi Diana & Pie58 I’m a member of the Evusheld FB & Twitter groups & can confirm it’s great to get involved. Makes me feel that I’m being pro active rather submissive in trying to get this for my husband who is the one with Chronic lymphocytic leukaemia (CLL) & ET & no vaccine response, he’s just had his 6th & me my 4th (it was 10 months since my last so assume my ABs were very low or non existent too). Also helps to realise there are so many of us from across many medical specialities & our numbers hopefully make us more powerful as a campaign group, Best wishes
Thanks for the responses above, it clearly is a ridiculous situation that a possible solution is available which could save the NHS lots of money in not having to treat people who are immunosuppressed yet we can’t get it despite it being approved here and in many other countries.
I still don’t get the reason it can’t be obtained privately, why does the NHS have to buy it why can’t an independent hospital eg Nuffield or Bupa etc etc buy it directly, sheer madness.
I have a relative in the US looking into the possibility of getting it there but as has been said it will be a huge trial to get my wife through the airport and on the plane, double dose Valium methinks. Joking apart if it is possible it may still be difficult to do and obviously very expensive but hey ho we can spend some of the kids inheritance 
Thanks for this group, I will keep an eye as I understand the usefulness of groups like this as a few years ago I had a non cancerous Brain Tumour which needed stereotactive radio surgery. I am pretty much recovered and receive bi annual MRI’s but keep on a similar group to this for the condition as it is nice to share my experiences with others who are a lot earlier on the journey.
Keep up the good work!