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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.

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

We do not currently have enough evidence to know whether people with blood cancer have an increased risk of catching coronavirus, but they might do. Ongoing research will help us to learn more about this.

One way to think about the average risk of getting coronavirus in the UK is to look at what proportion of people are currently infected. A recent report (published 11 September) suggests that in the week of 30 August to 5 September, around 1 in every 1,400 people was infected in England, and around 1 in every 2,600 people was infected in Wales (this is from an ongoing study, which regularly tests a random sample of 20,000 people in private homes in England and Wales).[1]

In recent weeks, there has been an increase in the number of people testing positive for COVID-19 aged 17 to 24 years and 25 to 34 years, whereas the number of people testing positive for COVID-19 aged 50 years and over appears to be stable or declining.[1]

This does not mean you have a 1 in 1,400 or 1 in 2,600 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.

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. How much this risk is increased is something we are still learning about.

Looking at intensive care data

If we look at recent intensive care data from England, Wales and Northern Ireland, we can see that up until 23 July, an estimated 1 in 5,820 of the general population had had coronavirus and been in intensive care. However, for those people with blood cancer who were advised to shield, this was an estimated 1 in 1,025.

The fact that people with blood cancer are over-represented in intensive care suggests they are more likely to need intensive care. We do not have data on this for Scotland as the Scottish intensive care data doesn't provide figures for blood cancers specifically. [2]

This research looks at your combined risk of getting coronavirus AND needing 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.

New research on the risk to blood cancer patients

The UK Coronavirus Cancer Monitoring Project has published its study on what happened to 1,044 cancer patients who came to hospital with COVID-19.[3]

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 blood cancer patients in this study died, the proportion of blood cancer patients overall who’ve died from coronavirus is likely to be significantly less than 36%.

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 very 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.

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.

Making decisions about how to lower your risk

When national guidelines keep changing, or are communicated without much explanation, it can get confusing and difficult to think about what's best for you.

It’s important to remember that guidelines are intended to be informative, to guide clinical teams and patients, but not to dictate what individual people do.

The information above, along with the national guidelines about who's at high risk, can help you understand your risk to some extent. But everyone with blood cancer is different.

Choosing to take extra precautions is a personal decision, affected by more than just your level of risk. There are many things that may affect your decisions about this:

  • your understanding of your level of risk
  • the mental and practical impact of the measures you're considering
  • your personal feelings about what risks you are willing to 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 and Scotland have been changed to reflect these findings, and only some types of blood cancer and treatment put children in the clinically extremely vulnerable group (on the shielding list). In Wales and Northern Ireland, the guidelines have stayed the same as for adults, and have continued to include children who currently have any type of blood cancer, and some who've been treated with a stem cell transplant in the past. We have information explaining the guidelines across the UK on which children are at high risk from coronavirus.

The fact that the guidelines have changed, and are different in different countries of the UK, is confusing. And as the government shielding programme has been paused across the UK, parents and carers are faced with difficult decisions, such as whether it's safe to send their child back to school, or whether members of the household should go out to work again.

The best advice for anyone who's unsure about what to do is to speak to their 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.

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.

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:

Talk to us

Call our free and confidential helpline on 0808 2080 888 from Monday to Friday, 10am to 7pm, and Saturday to Sunday, 10am to 1pm. Or email us if you prefer.

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 making sense of government guidance and the support that's available.

Tell us about your experience

You can help improve support for people with blood cancer by completing our impact of coronavirus survey. The results will help us understand the impact on people with blood cancer and help us support clinicians and the NHS.

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.

Sources

[1] Every week, the Office for National Statistics tests a random sample of over 20,000 people in England and Wales (in private homes, not hospitals or care homes) to monitor the number of infections. The results released on 11 September suggest that between 30 August and 5 September, around 1 in every 1,400 people was infected in England, and around 1 in every 2,600 people was infected in Wales .

[2] The Intensive Care National Audit and Research Centre reported that by 23 July, there had been 13,308 admissions to intensive care in England, Wales and Northern Ireland (Scotland are not part of this particular monitoring programme and have their own data, although this doesn't provide figures for blood cancers specifically). Of the 13,308 admissions in England, Wales and Northern Ireland, 10,428 have complete data about any existing medical conditions, and of these, 199 people had blood cancer. That is 1 in every 52 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 52 in intensive care shows that they were more likely to need intensive care.

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, we can see that so far, an estimated 1 in every 1,025 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 5,820. This suggests that people who were advised to shield with blood cancer could be roughly 6 times more likely to need intensive care than other people.

These figures are about the overall chance of both getting coronavirus AND needing intensive care. We don’t have the data to tell us your chance of needing intensive care once you already have coronavirus. But it's clear that this risk is higher in people with blood cancer. 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 – 369 patients), and having blood cancer (199 patients).

[3] Lennard Y W Lee, DPhil, et al. COVID-19 prevalence and mortality in patients with cancer and the effect of primary tumour subtype and patient demographics: a prospective cohort study. Published 24 August 2020.

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]