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Blood cancer and coronavirus

We're here for you if you want to talk

0808 2080 888

[email protected]

Understanding your level of risk

This page aims to help you think about the risk of coronavirus in the general population, in blood cancer, for you individually, and how to cope with this.

Page updated 17 May 2021

What risks should we look at?

When we talk about ‘risk’ we are talking about the chance of something bad happening.

With coronavirus, there are two key risks:

  • the risk of catching coronavirus
  • the risk of becoming seriously ill if you do get coronavirus.

There are many things that can increase or decrease the chances of either of these things happening.

The risk of catching coronavirus

One way to think about your risk of catching coronavirus in the UK is to look at what proportion of people are currently infected.

Coronavirus (COVID-19) Infection Survey - Office for National Statistics

This study is one of the main ways the UK is monitoring coronavirus levels in the community (looking at how many people are currently infected with coronavirus).

This ongoing study regularly tests a random sample of over 150,000 people in private homes in England, Scotland, Wales and Northern Ireland. The survey is being delivered in partnership with University of Oxford, University of Manchester, Public Health England and Wellcome Trust.

A recent report (published 14 May 2021) estimates that in the week ending 8 May 2021:

  • 1 in 3,450 people in England is currently infected (in February this was 1 in 145)
  • 1 in 1,430 people in Northern Ireland is currently infected (in February this was 1 in 195)
  • 1 in 4,230 people in Wales is currently infected (in February this was 1 in 205)
  • 1 in 1,250 people in Scotland is currently infected (in February this was 1 in 225)

This does not mean you have a 1 in 3,450 (in England) chance of catching coronavirus though - infection levels vary in different areas, and there are many other things that would increase or decrease your risk.

For example, we know that these things reduce your risk of catching coronavirus:

  • avoiding close contact with other people
  • avoiding busy places
  • keeping your hands clean and not touching your face
  • the number of infections in your area being lower.

I am listening to my medical team and Blood Cancer UK and then decide what I am comfortable with. I go out masked up for a walk early in the morning and I distance from others. I get my shopping delivered.

- Erica, living with chronic lymphocytic leukaemia

The risk of becoming seriously ill if you get coronavirus

We do know that when people with blood cancer get coronavirus, they have a higher chance of getting seriously ill from it.

Covid vaccine and blood cancer

Having the covid vaccine is an important way to protect yourself from serious illness from coronavirus. Read our pages about the covid vaccine and blood cancer, and how to get a vaccine.

A systematic review and meta-analysis of 3,377 patients with blood cancer and COVID-19

One meta-analysis published in December 2020 looked at the outcomes of patients with blood cancer and coronavirus (covering 3,377 patients) and found that overall, 34% of adult blood cancer patients with coronavirus died (these were predominantly hospitalised patients however). The full results include a breakdown of the number of deaths among the different types of blood cancer.

This does not mean your chance of dying if you have blood cancer and get coronavirus is 34% however. Most patients included in this meta-analysis were unwell enough to be in hospital. There would likely have been many more people with blood cancer who had milder coronavirus infections and therefore weren't included in the study or counted. So the death rate is likely to be lower than 34%.

A prospective cohort study of what happened to 1,044 cancer patients in hospital with coronavirus

The UK Coronavirus Cancer Monitoring Project published a study in August 2020 about what happened to 1,044 cancer patients who came into hospital with coronavirus.

The study found that people with blood cancer were more likely to die from coronavirus than people with other cancers.

Of the 224 people with blood cancer included in the study, about a third of them (36%) died. For comparison, when looking at all other cancer types (not including blood cancer), the proportion that died was 29%.

Across all cancers, being older and being male both add to the risk of dying. But once the data was adjusted to remove the effects of age and sex, then people with blood cancer were still more likely to die than those with other types of cancer.

People with leukaemia had the biggest increase in risk of dying. People with lymphoma or myeloma also had an increased risk. People with other types of blood cancer (including MDS and MPNs) had a slightly reduced risk (but the number of these people included in the study was low).

This study only looked at people with blood cancer who went to hospital after getting coronavirus. We don’t know how many other people with blood cancer have had coronavirus and had mild or no symptoms. So whilst 36% of the blood cancer patients in this study with coronavirus died, the proportion of blood cancer patients overall who've died from having coronavirus is likely to be significantly less.

This study was also conducted during the first peak of COVID-19 infection in the UK. Already doctors know much more about how to treat people effectively when they have to go to hospital.

Leukaemia, lymphoma and other types of blood cancer are broad categories containing different diseases, some of which doctors suspect will have different COVID-19 risks. The figures from this study are averages taken from broad groups of patients, but a person’s individual level of risk will depend on their particular condition and general health.

Factors associated with COVID-19-related death using OpenSAFELY

This study analysed NHS health data and 10,926 covid-related deaths in England, between 1 February 2020 and 25 April 2020. This study is the largest any country has done to date, which gives evidence about risk factors associated with COVID-19 deaths.

Blood cancers (haematological malignancies) were considered separately from other cancers in this study, to reflect the immunosuppression associated with these diseases and their treatment.

The study found that people who'd had blood cancer in the last five years had at least a 2.5-fold increased risk of dying from coronavirus, which decreased slightly after five years. For other cancers, the increase in risk was smaller and mostly associated with a more recent diagnosis.

The study also found that other risk factors included being male, having a higher level of deprivation, having diabetes, severe asthma or various other health conditions, being Black or Asian, and most importantly, being older.

You can read the full article in the journal Nature: Factors associated with COVID-19-related death using OpenSAFELY.

Two studies about people with CLL and coronavirus

Two studies published in the second half of 2020 looked at people with chronic lymphocytic leukaemia (CLL) who got coronavirus.

The first study, published in the journal Blood, looked at what happened to 198 people with CLL, from the US, Europe and South America, who were diagnosed with coronavirus between February and April 2020.

The second study, published in the journal Leukemia, looked at 190 people with CLL, mostly from Italy and Spain, who were diagnosed with coronavirus between March and May 2020.

The first study found that, excluding people who were still ill when the study finished, 44% of the patients died. In the second study, this figure was 36%. These are higher death rates than you would expect in a group of people who did not have cancer.

The actual death rate is almost certain to be lower however. These studies looked at people diagnosed with coronavirus between February and May 2020. During this time, testing was mostly being done in hospitals and care settings, as mass testing in the community wasn't rolled out until late May. This means that these studies are mainly looking at people who were ill enough to get a coronavirus test at the time. There are likely to have been many more people with CLL who had mild or asymptomatic coronavirus and who recovered at home.

It's also important to remember that these cases are all from earlier in 2020, and since then, doctors have got better at treating coronavirus. So if the same number of people with CLL were diagnosed over the next few months, we would hope that more of them would survive.

But these studies do suggest that the coronavirus is significantly more dangerous for someone with CLL than for someone who does not have cancer. They suggest that people with CLL should continue to take extra precautions to avoid coming into contact with the virus.

Looking at intensive care data

The ICNARC (Intensive Care National Audit & Research Centre) reports on intensive care admissions in England, Wales and Northern Ireland. This data also shows that people with blood cancer are more likely to need intensive care treatment for coronavirus than the general population.

A recent trend that is concerning for people with blood cancer:

The ICNARC reports regularly on who is admitted to intensive care in England, Wales and Northern Ireland, and any existing health conditions they have. Since the start of 2021, when covid vaccines began to be widely rolled out, the proportion of people in intensive care beds who had blood cancer compared with other health conditions has been growing. This could be because the vaccines are protecting people with other health conditions more than people with blood cancer. See our blog: People with blood cancer now account for 1 in 20 new covid intensive care patients.

Intensive care data from the start of the pandemic:

The ICNARC report from 10 May 2021 shows that, from the beginning of reporting at the start of the pandemic, up until 30 April 2021, there have been 36,494 patients admitted to intensive care. Of these, 631 had blood cancer. That is 1 in every 59 patients in intensive care. By comparison, people with blood cancer who were advised to shield make up an estimated 1 in every 325 of the general population. So the fact that they made up 1 in 59 in intensive care shows that they were more likely to need intensive care. (Scotland are not part of this particular monitoring programme and have their own data, although this doesn't provide figures for blood cancers specifically).

Looking at the number of people with blood cancer who were previously advised to shield in these countries (an estimated 204,000), and the number of people with blood cancer who've been in intensive care with coronavirus (631), we can see that overall, an estimated 1 in every 323 people shielding with blood cancer have needed intensive care. In the population of people who were not in the shielding group for blood cancer, this is 1 in 1,695. This suggests that people who were advised to shield with blood cancer could be roughly 5 times more likely to need intensive care than other people.

This data looks at the proportion of people with blood cancer who've had coronavirus AND needed intensive care. It does not take into account the number of people with blood cancer who had coronavirus but did not need intensive care. We do not have data to tell us your actual chance of needing intensive care once you already have coronavirus. But it's clear that this risk is higher in people with blood cancer. This data is also a running total since reporting began at the start of the pandemic. It is an overall picture of what has happened between early 2020 and now. In addition, the data above did not include people with MDS or MPNs in the count of people with blood cancer – so we are not sure how many people with these conditions have needed intensive care.

In this data set, the two factors that caused the most intensive care admissions were being immunocompromised (due to recent cancer treatment – 1,279 patients), and having blood cancer (631 patients).

Your personal risk

Every person’s level of risk is unique to them and depends on many things. There are many aspects that could increase or decrease your individual risk.

Things that increase the risk of serious illness from coronavirus include:

  • being older
  • being male
  • being from a black or minority ethnic background
  • having a body mass index of 30 or more (obesity)
  • having blood cancer
  • having blood cancer treatment
  • having had a stem cell transplant
  • having a compromised immune system or being on immunosuppression drugs
  • having other existing health conditions.

But other things that could affect your risk are:

  • your particular type of blood cancer
  • your particular treatment
  • how long ago you were diagnosed
  • how your immune system is functioning
  • your general level of fitness.

Those last five points are really important

Within the blood cancer community, some people will be at a higher risk and some will be lower risk, depending on their individual circumstances. For example, someone who has recently had a stem cell transplant might be at a higher risk than someone with a slow-growing chronic condition who isn’t currently having treatment.

That’s why it’s so important to talk to your healthcare team about your individual level of risk. They won’t be able to tell you your exact chances of getting seriously ill with coronavirus, but they can talk to you about what you can do to protect yourself.

Coping with risk and uncertainty as lockdown eases

We have a web page that talks about the protection offered after your covid vaccine, how to think about different risks and making decisions, and dealing with uncertainty. Read more: Coping with risk and uncertainty as lockdown eases.

Coping with being classed as vulnerable or high risk

Being constantly exposed to information about coronavirus and being told you're at high risk can have a big impact on your mental health.

It might feel like there is nothing you can do about the situation, but there are things you can control:

You can look after your mental health during this time too:

Mark Noblet.jpg

Stay strong. Stay well. We're all in this together

Mark shares his advice on coping with isolation during treatment, and now.

Mark's story

Making decisions about how to lower your risk

Everyone with blood cancer is different and has their own level of risk.

Choosing to take extra precautions is a personal decision, as well as which precautions you choose to take.

There are many things that may affect your decisions about this:

  • your understanding of your level of risk
  • your healthcare team's advice
  • the mental and practical impact of the measures you're considering
  • your personal feelings about what risks you are willing to take.

What to ask your healthcare team

Your healthcare team are the best people to speak to about your risk because:

  • they are experts in blood cancer
  • they know your personal medical history
  • they are in the best position to understand how your medical history could affect your risk.

If you’re not sure what to say, you could try asking:

  • What do I need to do to protect myself?
  • How risky is it for me to go for a walk/go to the shops/go out to work?
  • Is it safe for me to meet up with people who aren't in my household?
  • What do I do if the people I live with aren't taking the same precautions as me?
  • For children: what do we need to do as a family to protect a child who's at high risk?

We have more information on staying safe and precautions you can take.

Risk levels for children with blood cancer

Since the national guidelines were first published, we have learned more about how coronavirus affects different people. For example, we’ve learned that coronavirus usually affects children much less severely than it does adults (and older adults in particular).

For children, having blood cancer does increase their risk of becoming seriously ill from coronavirus, but at the same time, the fact they are a child could reduce this risk - we just don’t know by how much.

We do now have data about children with cancer who've also had coronavirus. Although it's based on the small number of children in the UK affected by both conditions, it seems to suggest that the risk from coronavirus for children with cancer is not as significant as previously thought.

The guidelines in England, Scotland, Wales and Northern Ireland have been changed to reflect these findings, and only some types of blood cancer and treatment put children in the clinically extremely vulnerable group now (on the shielding list). We have information explaining the guidelines across the UK on which children are at high risk from coronavirus.

If you are finding it difficult to decide whether to send your child back to school, or whether members of the same household should go out to work again, then speak to your child's healthcare team. They know your child, and have the expertise to assess the risks and explain what you need to do to keep your child safe. You can also talk to us.

We have more information and data about coronavirus and schools.

Talk to us

Summary

Risk is a very complicated thing, and it can only ever talk about averages and guess at people’s chances of experiencing things, based on what’s happened to other people. An important number we still don’t know is how many people with blood cancer have had coronavirus in total – without this number we can't work out what proportion of these people get seriously ill. More research is also needed into how coronavirus affects people with different types of blood cancer.

The information above can help you understand your level of risk to some extent. Key points are that people with blood cancer are at a higher risk of serious illness if they get coronavirus, but that there are many variations of risk within this, and some people will have a lower or higher risk.

If you have any questions about your level of risk or what you should do to protect yourself, speak to your healthcare team. They know your individual circumstances and can give you the most personalised advice.

We have more information on Coping with risk and uncertainty as lockdown eases.

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.

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]