I was diagnosed with angioimmunoblastic t-cell lymphoma in May this year and have since undergone a course of CHOP chemotherapy and a stem cell transplant. I can’t be revaccinated until February next year and was relieved therefore to find that from 16 December, people at high risk of death from contracting Covid should be able to access neutralising monoclonal antibodies (nMAbs) or antiviral medication, considerably reducing the likelihood of hospitalisation. I have since found however there is no useful guidance regarding how to access treatment should I contract Covid.
Are others in a similar predicament experiencing the same, or have you been able to find practical and accurate advice online regarding how to access treatment should it become necessary anywhere online please?
A great big welcome and I am glad you have, Blood Cancer UK are forever updating their information, as they get it, and if you would like to talk to someone the Blood Cancer UK support is also there.
You might also like to talk to your medical team, Clinical Nurse Specialist or in the first place your GP.
Someone else might be able to help more?
In the mean time look after yourself and I look forward to hearing more about you.
Thank-you. I have contacted my hospital care team and my GP. As you likely know, hospital care teams are not involved in the provision of third/fourth vaccines for the immunosuppressed and the same applies to nMABs & antivirals. I’ve yet to receive a response from my GP but my limited understanding is that local NHS CDMUs are responsible for prescribing nMABs & antivirals, not GP practices. Hopefully when the advice on your website is brought up to date, it will be more useful.
Hi @Paul I will copy your post to @Alice_BloodCancerUK.
Thank-you. My fear is with omicron being so transmissible, even if it has more mild symptoms and less morbidity in the general population than Delta, it will still be very dangerous to the immunosuppressed and I think it is important to know what the correct pathway is to potentially life saving treatment.
Yes, I agree with your thinking.
We all need to stay safe.
Well done for getting another article done in The Guardian about the way Blood Cancer sufferers are being treated…
Rising number of blood cancer patients dying of Covid in England and Wales | Coronavirus | The Guardian
Shocking that the Guardian article estimates 1 in 23 or about 4.3% of current deaths from Covid are people with blood cancer, given we make up only about 0.4 of the population. It indicates in part at least there is a failure to protect blood cancer patients from Covid by vaccines, or alternatively antivirals or nMAbs.
Hello all
Today we hear that Sotrovimab will be available to COVID PCR positive immunosupressed cohort, and we know that Molnupiravir and Ronanpreve are in the pipeline ---- BUT how will we access them? After the fiasco over the Third Jab I still have nothing in writing to exhibit to show entitlement to a Booster let alone one of these new treatments, so how can we access them? Maybe a forehead tattoo? ID cards with medical info? Covid passes that show the third jab? Answers on a postcard please…
Hi @Paul, I totally understand your concerns. I had a stem cell transplant in August and have only been able to get 1 covid jab so far. My next is due in the 2nd week of Jan. I asked for it after 6wks rather than 8 but the south west vaccination board have suggested it’s not in my best interest to have it sooner! I have no idea why. It has left me incredibly vulnerable and I too have no idea where you would obtain the antivirals or antibody medication. You need to start taking it before you get sick enough to be admitted to hospital so I’m totally in tha dark.
My hospital medical team have been great through my treatment but anything that they don’t deal with leaves you at the mercy of your GP surgery; just to get covid jabs re-administered for myself and my 16 and 18 year old sons boosted was a huge battle. From my experience the gp call centre will have no idea about the extra medication for people like ourselves.
I wonder if 111 would be the first port of call if any of us are unlucky enough to contract covid? If anyone knows the official route to these extra medications it would be a huge relief.
Hi Lyn,
I’m Lyn, I’m really sorry to hear you’re having such a difficult time. The most useful information I’ve found is this letter from NHS England to GP practices:
I am not an knowledgeable about this issue or qualified to provide accurate advice, but It seems from the letter that if you are correctly registered as being in an eligible category to receive antiviral or nMABs, you should receive a PCR test by post from an NHS hub. If you develop Covid symptoms, you take the test and if it is positive, you return it by post and register the result online and the NHS should then contact you and assess you for either nMABs or antivirals and either prescribe you the antivirals or send you to a local COVID-19 Medicine Delivery Unit (CMDU) for treatment.
As you point out, you need to access treatment fairly quickly for it to be effective. I do not appear to be registered as high risk and have not received any contact from the NHS. Uncleroy has also commented on this.
While I am urgently trying to find out how to become registered as high risk via my care team and GP, I have managed to obtain a PCR test from Track & Trace by calling 119, so at least that won’t cause a delay if I become infected with Covid.
I hope that helps. Hopefully Blood Cancer UK will realise the urgency around this issue and update their guidance, which please defer to.
Very best, Paul
Hi @Paul thank you for sharing this. Please be reassured we are in conversations with the NHS and are updating our guidance at this moment and I will share our updated webpage which will include what we know so far, as soon as it is updated.
Hi @Paul, the information above is really excellent, thankyou so much for finding this. It makes for very interesting reading. I can see from the list that I am listed in the priority group so that’s the first hurdle overcome, as you say it’s being officially registered as such which might be more of an issue. I hadn’t heard of a CMDU before but I feel that with this info. I can at least speak with confidence to protect myself should covid come my way.
Many Thanks
Hi @Paul
I’ve just had an email from the NHS informing me that I’m on the at risk list and confirming the process as you describe it. They are sending out PCR test kits shortly. Hopefully this process is now swinging into action.
Best wishes, Frank
Hi Paul
I don’t know if this is helpful but I just received an email from the NHS indicating that I might be suitable for treatment should I test positive for coronavirus. I’m current in remission with follicular lymphoma.
The letter provides the following link which I think is helpful. Treatments for coronavirus (COVID-19) - NHS
If you don’t receive a letter and you test positive for Covid, then you should contact your GP re accessing latest Covid treatments.
Best wishes.
Hi all
I’ve just received an NHS letter confirming all that Paul says. A PCR test is apparently being sent to me soon. This is very reassuring. About time!
Hi everyone,
I’ve also just received my email from the NHS about receiving a PCR test etc and how to access additional treatments to take from home, if testing positive.
This feels like a great Christmas present as (a) it’s more hopeful than when there were no treatments and (b) it arrived all by itself without me spending days and weeks making phone calls and going round in circles trying to get the 3rd dose.
I am very happy 
Thank you @BloodCancerUK-SupportTeam for all the great work you do presenting our case to the Government and raising awareness in the media. This looks like a result 
I do hope that everyone here on this forum is receiving this email, or will be shortly.
Hi. I have received the same information today. Very happy news.
Hi @Paul, just got my email too. Exactly as you said, brilliant news. 
Hi @ellis a great big welcome to our forum and already you have shown it’s value by telling us that you have received your NHS email.
We are here to support you, I look forward to hearing more about you.
Look after yourself.