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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.

Making sense of changing advice

Guidelines about shielding are starting to change, becoming less consistent across the UK, and they may even conflict with what your clinical team are saying.

You may also have seen statistics in the media and news that can be hard to understand.

It can be difficult to make sense of all the advice and decide what’s best for you.

We hope the information on this page will help you think about your own risk, how to cope with this, and questions to ask your healthcare team.

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.

Understanding your individual risk

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 18 June) suggests that between 31 May and 13 June, around 1 in every 1,700 people was infected (this was from a study done in England, which tested a random sample of 20,000 people in private homes). [1]

This does not mean you have a 1 in 1,700 chance of catching coronavirus though - infection levels vary in different areas, and there are many 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
  • following shielding advice
  • the number of infections in your area going down.

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. But if we look at recent intensive care data from England, Wales and Northern Ireland, we can see that up until 18 June, an estimated 1 in 6,935 of the general population had had coronavirus and been in intensive care. However for people shielding with blood cancer, this was an estimated 1 in 1,180. 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 is looking 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.

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 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 they think would be sensible precautions for you to take, and how strictly you might want to shield.

Making decisions about how to shield

When shielding 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 these are guidelines. They are intended to be informative, to guide clinical teams and patients, but not to dictate what individual people should do.

The information above, along with national shielding guidelines, can help you understand your risk to some extent. But everyone with blood cancer is different.

Choosing to shield, and how you shield, is a personal decision, affected by more than just your level of risk. There are many things that may affect your decisions about shielding:

  • your understanding of your level of risk
  • the mental and practical impact of shielding
  • 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:

  • How strictly do you think I should follow the shielding guidelines?
  • How risky is it for me to go outside?
  • What do I do if people I live with are still going out?

We have more information about how to shield and ways to protect yourself.

Coping with being classed as vulnerable or high risk

Being constantly exposed to information about coronavirus, your risk, and being asked to shield, 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 how to shield and the various ways you can protect yourself.

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 around 20,000 people in England (in private homes, not hospitals or care homes) to monitor the number of infections. The results released on 18 June suggest that at any given time between 31 May and 13 June, around 1 in 1,700 people was infected.

[2] The Intensive Care National Audit and Research Centre reported that by 18 June, there had been 12,573 admissions to intensive care in England, Wales and Northern Ireland (Scotland are not part of this particular monitoring programme, but they have their own data, although this doesn't provide figures for blood cancers specifically). Of the 12,573 admissions in England, Wales and Northern Ireland, 9,780 have complete data about any existing medical conditions, and of these, 173 people had blood cancer. That is 1 in every 56 patients in intensive care. By comparison, people with blood cancer currently shielding make up 1 in 325 of the general population. So the fact that they make up 1 in 56 in intensive care shows that they are more likely to need intensive care.

Looking at the number of people we think are shielding with blood cancer in these countries (an estimated 204,000), this equates to roughly a 1 in 1,180 chance of getting coronavirus and needing intensive care. The chance of getting coronavirus and needing intensive care if you are not in the shielding group for blood cancer is about 1 in 6,935. This suggests that people shielding 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 – 334 patients), and having blood cancer (173 patients).

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.