£
Donate

We're here for you if you want to talk

0808 2080 888

[email protected]

Blood cancer and coronavirus

We're here for you if you want to talk

0808 2080 888

[email protected]

Which adults are at high risk from coronavirus?

This page explains which people with blood cancer are at high risk from coronavirus (clinically extremely vulnerable) and what to do if you think you should be on the shielding list.

If you are a healthcare professional, our healthcare professionals pages contain the latest guidance and tools to help you care for your patients and yourself.

Page updated 28 February 2021

As COVID-19 is a new virus in humans, we don't fully understand if there are differences in the way it affects people with leukaemia compared with other blood cancers. There are research projects looking into this however. One meta-analysis published in December 2020 looked at outcomes of patients with blood cancer and coronavirus (covering 3377 patients) and found that overall, 34% of adult blood cancer patients with COVID-19 died (these were predominantly hospitalised patients however).

Similarly, research from the UK Coronavirus Cancer Monitoring Project (based on 1,044 cancer patients who came to hospital with COVID-19) found that people with blood cancer had an increased risk of dying from coronavirus than other cancer patients. They found that people with leukaemia had the biggest increase in risk, but people with lymphoma and myeloma also had an increased risk. There are other factors that would increase or decrease your risk as well however, and the study only looked at people who were unwell enough to go to hospital with coronavirus.

You can read more about these research studies on our page about understanding your level of risk.

We've also published a blog: Does having chronic lymphocytic leukaemia (CLL) increase your risk from the coronavirus?

Below you can find more detailed information about who in the blood cancer community is at high risk (should be on the shielding list) and how to reduce your risk.

For information about the specific cancer you have, please read our health information about leukaemia, including symptoms and diagnosis, treatment and side effects, and living with leukaemia. 

As COVID-19 is a new virus in humans, we don't fully understand if there are differences in the way it affects people with leukaemia compared with other blood cancers. There are research projects looking into this however. One meta-analysis published in December 2020 looked at outcomes of patients with blood cancer and coronavirus (covering 3377 patients) and found that overall, 34% of adult blood cancer patients with COVID-19 died (these were predominantly hospitalised patients however).

Similarly, research from the UK Coronavirus Cancer Monitoring Project (based on 1,044 cancer patients who came to hospital with COVID-19) found that people with blood cancer had an increased risk of dying from coronavirus than other cancer patients. They found that people with leukaemia had the biggest increase in risk, but people with lymphoma and myeloma also had an increased risk. There are other factors that would increase or decrease your risk as well however, and the study only looked at people who were unwell enough to go to hospital with coronavirus.

You can read more about these research studies on our page about understanding your level of risk.

Below you can find more detailed information about who in the blood cancer community is at high risk (should be on the shielding list) and how to reduce your risk.

For information about the specific cancer you have, please read our health information about lymphoma, including symptoms and diagnosis, treatment and side effects, and living with lymphoma. 

As COVID-19 is a new virus in humans, we don't fully understand if there are differences in the way it affects people with leukaemia compared with other blood cancers. There are research projects looking into this however. One meta-analysis published in December 2020 looked at outcomes of patients with blood cancer and coronavirus (covering 3377 patients) and found that overall, 34% of adult blood cancer patients with COVID-19 died (these were predominantly hospitalised patients however).

Similarly, research from the UK Coronavirus Cancer Monitoring Project (based on 1,044 cancer patients who came to hospital with COVID-19) found that people with blood cancer had an increased risk of dying from coronavirus than other cancer patients. They found that people with leukaemia had the biggest increase in risk, but people with lymphoma and myeloma also had an increased risk. There are other factors that would increase or decrease your risk as well however, and the study only looked at people who were unwell enough to go to hospital with coronavirus.

You can read more about these research studies on our page about understanding your level of risk.

Below you can find more detailed information about who in the blood cancer community is at high risk (should be on the shielding list) and how to reduce your risk.

For information about myeloma, please read our health information about myeloma, including symptoms and diagnosis, treatment and side effects, and living with myeloma. 

As COVID-19 is a new virus in humans, we don't fully understand if there are differences in the way it affects people with leukaemia compared with other blood cancers. There are research projects looking into this however. One meta-analysis published in December 2020 looked at outcomes of patients with blood cancer and coronavirus (covering 3377 patients) and found that overall, 34% of adult blood cancer patients with COVID-19 died (these were predominantly hospitalised patients however).

Similarly, research from the UK Coronavirus Cancer Monitoring Project (based on 1,044 cancer patients who came to hospital with COVID-19) found that people with blood cancer had an increased risk of dying from coronavirus than other cancer patients. They found that people with leukaemia had the biggest increase in risk, but people with lymphoma and myeloma also had an increased risk. There are other factors that would increase or decrease your risk as well however, and the study only looked at people who were unwell enough to go to hospital with coronavirus.

You can read more about these research studies on our page about understanding your level of risk.

Below you can find more detailed information about who in the blood cancer community is at high risk (should be on the shielding list) and how to reduce your risk.

For information about the specific cancer you have, please visit our blood cancer information pages and select a type of blood cancer.

If you're on this page because you've recently been diagnosed with blood cancer, you're probably struggling to come to terms with a situation you never imagined you'd be in. Read our information on what you need to know when you've just been diagnosed. And contact our Support Services Team who are here to to talk things through.

How to get a vaccine if you have blood cancer

We have a separate page about how to get a covid vaccine if you have blood cancer. This explains who can now be vaccinated in which priority groups, what to do if you have blood cancer and still haven't been invited, and how to book your vaccine.

If you have an MPN and are having trouble getting on the shielding list - share this document with your GP - it explains why you should be on the list and how to add you.

Who is at high risk from coronavirus (COVID-19)?

Last updated: 28 February 2021

This information is relevant for you wherever you live in the UK.

Across the UK, people who are identified by the NHS as being at high risk from coronavirus (clinically extremely vulnerable) should have been contacted directly by letter, email or text.

Adults and children with blood cancer may have a compromised immune system and therefore be at high risk of serious illness from coronavirus.

If any of the following apply to you, you should have been contacted directly by the NHS about shielding:

Further down this page is more detail on who is clinically extremely vulnerable, including information about stem cell transplants, CML patients, MPN patients, and people in remission.

Being on the shielding list is important to make sure you are invited for your covid vaccine at the appropriate time.

It also means you'll get relevant letters from the government, which act as proof for your employer that you are clinically extremely vulnerable (and can't go to work in some very high risk areas).

Stem cell transplants

The guidance about who should be classed as clinically extremely vulnerable after a transplant has not always been consistent throughout the pandemic. Currently:

  • If your transplant was 6 months ago or less, you are automatically classed as clinically extremely vulnerable (on the shielding list) (priority group 4 for the covid vaccine) according to current government guidance.
  • If your transplant was more than 6 months ago, you are automatically classed as vulnerable (not extremely vulnerable) and are in priority group 6 for the covid vaccine (see ‘Persons with underlying health conditions’ on this gov.uk web page). This is also highlighted in The Green Book (main guidance on vaccinations in the UK) (see Table 3). But – your doctor can choose to move you to the extremely vulnerable group (priority group 4 for the vaccine). See the information under 'Talking to your doctor' below.

Whilst the government guidance only automatically includes those whose transplant was 6 months ago or less in the clinically extremely vulnerable (shielding) group, it also highlights that clinicians will use their judgement to add other people to the shielding list if they believe they could be at higher risk. The Green Book also advises an individual approach: “A hospital clinician or GP can also add a patient to the list, based on their clinical judgement, because they consider them to be at very high risk of serious illness from COVID-19.”

The latest clinical advice has moved away from putting an exact time frame on how long you are clinically extremely vulnerable for after a transplant. This is something individual that should be discussed with your doctor or haematology team.

Currently, the BSBMTCT (British Society of Blood and Bone Marrow Transplantation) advises that you are clinically extremely vulnerable after an autologous transplant (using your own stem cells) or an allogeneic transplant (using donor stem cells), regardless of how long ago it was.

You may want to share this with your doctor: SARS-CoV-2 vaccination following haematopoietic stem cell transplant (HSCT) updated 12 January 2021 by the British Society of Blood and Bone Marrow Transplantation (BSBMTCT)

Two key bullet points from this guidance are:

  • HSCT and CAR-T patients can receive any of the licensed SARS-CoV-2 vaccines.
  • HSCT and CAR-T recipients should be considered clinically extremely vulnerable (CEV) at any time point post procedure. Therefore priority for all patients post-HSCT and CAR-T should be considered equivalently, irrespective of indication (malignant or non-malignant), time from treatment and age (within the constraints of the lower age limit of 16 years). Where necessary, GPs and specialists should make an individual case for any HSCT patient to be covered by the CEV criteria, where they not explicitly covered in priority group 4.

An important point is that your clinical vulnerability to coronavirus is individual to you, and is something that should be assessed and discussed with your haematology team.

The British Society for Haematology (B-S-H) and the National Institute for Health and Care Excellence (NICE) in their rapid guideline on haematopoietic stem cell transplantation, both now signpost to the BSBMTCT guidance. The European Society for Blood and Marrow Transplantation (EMBT) also do not give exact time frames, but say more generally that stem cell recipients who are still regarded as immunosuppressed should take extra precautions.

So, if you have been told you are clinically vulnerable (in group 6 of the vaccine roll-out) but not clinically extremely vulnerable (in group 4 of the vaccine roll-out), it may be worth talking to your hospital team or GP about the information above, and asking whether you should be moved into the clinically extremely vulnerable group.

More detail on the clinically extremely vulnerable group

Last updated: 16 February 2021

If you fall into any of the categories above, you should have been contacted directly by the NHS to tell you what measures you should take to protect yourself. This means you are on the 'shielding list', you should get the vaccine earlier, and you should take extra precautions.

People are still being identified as high risk and can be added to the shielding list. This is important to ensure you take the right precautions, get the vaccine earlier, and get any support you are entitled to in the future.

If you think you should have received shielding letters but you haven't, contact your hospital team or GP. They may need to add you to the shielding list.

If you're having problems asking your GP to add you to the shielding list, use this web page from Blood Cancer UK, and share it with your GP. It includes information for GPs and hospital teams on how to add you to the shielding list.

If you are looking for information about children, we have more information about which children are at high risk from coronavirus.

If you are looking for information about risk if you’re in remission, see below.

There are certain groups of patients, such as people with CML taking TKIs, and people with MPNs, where it’s not so clear how high-risk they are. The NHS at a national level does include all CML and MPN patients in the clinically extremely vulnerable category. Now that we know how high-risk blood cancer patients are from coronavirus, it is crucial that all blood cancer patients, including CML and MPN patients, are added to the Shielded Patients List (listed as clinically extremely vulnerable) and invited for their covid vaccine. GPs can and should add their CML and MPN patients to the Shielded Patients List. If you need help talking to your GP about this, read this web page.

If you have an MPN and are struggling to get on the shielding list, share this document with your GP. It explains why you should be on the list and how to add you.

If you have a pre-cancerous condition such as MGUS, solitary plasmacytoma or monoclonal b-cell lymphocytosis, then you are not automatically included in the high risk group outlined above. However, if you received a letter, you should follow the advice for people at high risk until you speak to your medical team. You may have received it because your hospital team or GP believes you could still be at a high risk, or because you have another condition that puts you at high risk. If you have not received a letter, we recommend you speak to your healthcare team as soon as possible to find out what you should do to protect yourself. In the mean time, you should carefully follow the general social distancing advice for people in England, Scotland, Wales and Northern Ireland, linked to on this page.

I am in remission - am I at high risk?

Last updated: 16 February 2021

If you have myeloma and are in remission, you could still have a compromised immune system. You would be included in the criteria above as someone who "currently has any type of blood cancer, whether you are having treatment or not." Therefore you should be on the shielding list, get a vaccine earlier, and follow the advice for people at high risk.

If you have a chronic blood cancer but are currently in a remission, you could still have a compromised immune system. You would also be included in the criteria above as someone who "currently has any type of blood cancer, whether you are having treatment or not." Unless your hospital team have told you otherwise, you should be on the shielding list, get a vaccine earlier, and follow the advice for people at high risk.

If you're in remission from any other blood cancer, the length of time it takes for your immune system to recover after cancer and its treatment varies depending on the type of cancer, the treatment given and you as an individual. There is no specific time frame. Generally, it takes a few months to a year to recover. Many people’s immune system recovers to a normal level after treatment. If you're in any of the groups outlined above, you should have been contacted directly by the NHS about how to protect yourself, meaning you are on the shielding list. If you haven't been contacted, but are worried about your risk, speak to your healthcare team or GP.

If you have finished chemotherapy treatment in the last 3 months, speak to your healthcare team or GP about whether you should be added to the shielding list, take extra precautions and get the vaccine earlier. Until you have spoken to your team, follow the advice for people at high risk.

For people who are not at high risk, follow the general advice on social distancing for people in England, Scotland, Wales and Northern Ireland, linked to on this page.

If you are at high risk

If you have received a letter or text from the NHS about being at high risk, or your healthcare team has advised you to follow shielding guidelines, then read our information for people at high risk.

You should also get the covid vaccine earlier, as you are clinically extremely vulnerable.

The information above is a guide about who may be at high risk. But not everyone has the same level of risk. We have more information on understanding your own level of risk.

If you still have questions about being on the shielding list

Speak to your healthcare team, or contact us on 0808 2080 888 or [email protected]

Blood Cancer Medical Information Card

We’ve made this card so you can keep important details like your NHS number and your medical team with you at all times. This could be especially important if you’re admitted to a different hospital for any reason. It should help ensure your usual doctor or hospital team is aware and involved in any discussions about treatment or care.

Blood Cancer Medical Information Card

To use this card:

  1. Download it and fill in your details (you’ll need to open it in Adobe Acrobat Reader)
  2. Print it, or take a photo on your phone and ‘favourite’ it
  3. Tell family and friends where your card is

Download your card here:

Your healthcare team are still there for you

While it’s true that doctors and nurses are very busy responding to coronavirus, and you may see changes to your appointments or the way you contact your team, they are still there for you. Your healthcare team want to hear from you if you have worries, questions, or your symptoms change – keeping you well is a priority. We have more information on how treatment and appointments are being affected by coronavirus.

How can I reduce my risk of catching coronavirus?

Last updated: 31 July 2020

Taking extra precautions can reduce the risk of you catching coronavirus. How you choose to do this is a personal decision. If you are taking extra precautions, then other people that live with you may want to do this too. Read more about this in our information for people at high risk.

If you are not in one of the high risk groups, you should follow general social distancing advice for people in England, Scotland, Wales and Northern Ireland, linked to on this page.

Working with Government on access to shielding letters

On 7 May, Peter Johnson (Clinical Director for Cancer in England) sent out this letter to cancer teams across England. This letter urges cancer teams to continue identifying patients at high risk from coronavirus and urging them to shield. It includes links to how GPs and hospital teams can add patients to the list for a shielding letter. It states that the process for adding patients to this list will continue to be open throughout the COVID-19 incident. The letter also clarifies who is at risk in the blood cancer community, specifically including people with MDS and those being ‘managed expectantly’ (on watch and wait).

In view of the concerns we had from people with blood cancer in Wales, we worked with Angela Burns, a member of the Senedd, to contact the Minister asking about people with CLL and MPNs. We received this response, which indicates that some people with CLL and MPN should be included in the shielding guidance:

Keep updated about coronavirus and blood cancer

Join our mailing list for key updates about coronavirus for people with blood cancer, what we're doing to help, and ways you can help, including campaigns you may be interested in.

Support for you

Call our free and confidential support line on 0808 2080 888. We are currently receiving a very high volume of calls related to coronavirus, so if you're not able to get through straight away, please leave a message and we'll get back to you as soon as we can.

You can also email us if you prefer to get in contact that way. We'll usually get back to you within two working days, but due to the current rate of calls and emails we are currently receiving it may take us longer.

Talk to other people with blood cancer on our Online Community Forum – there is a group for coronavirus questions and support.

You can also find out what's helping other people affected by blood cancer through coronavirus and beyond in our pages on living well with or after blood cancer.

General information on cancer and coronavirus

Last updated: 4 June 2020

While this page gives information specific to blood cancer, we have also worked with a group of cancer charities and the NHS to answer some commonly asked questions about coronavirus and cancer. You can see the document published by One Cancer Voice here:

One Cancer Voice is a group of cancer charities working together to provide consistent advice.

parent-emotion-researcher-smiling-hugging-bloodcanceruk_5.jpg

Will you support our work?

Coronavirus has led to a sudden drop in income, putting our dream of funding the research that beats blood cancer under threat. If you’re able to donate, we need your support now more than ever.

Make a donation

The following companies have provided funding for our coronavirus support, but have had no further input: AbbVie, AstraZeneca, Celgene, Gilead, Incyte, Kyowa Kirin, Novartis, Pfizer, Sanofi, Takeda.

We're here for you if you want to talk

0808 2080 888

[email protected]