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Coronavirus (COVID-19) and your stem cell transplant

Sofia Lingard, daughter of Victor Douglas, patient

UPDATED 16 November 2022

Latest updates:

  • The UK government believes there is currently not enough data to prove that Evusheld, a new preventative treatment, is effective against the Omicron variant of COVID-19. For this reason, they won't be buying any doses for use in the UK. We are campaigning with other charities and clinicians to urge the government to make Evusheld available from the NHS.
  • Although Evusheld is not currently available from the NHS, it is now available privately in the UK. Blood Cancer UK explains how it can be accessed.

On this webpage, you'll find all the information you need as someone with a weakened immune system in the ongoing COVID-19 pandemic.

Please note that information can change quickly so always check with your healthcare team for the best information and support for your individual situation.

This information is split into the sections below:

You can contact the Anthony Nolan Patient Services helpline for further information and support on 0303 303 0303 or patientinfo@anthonynolan.org

Vaccines

Will the COVID-19 vaccine be suitable for me?

The approved COVID-19 vaccines are suitable for people who have had a stem cell transplant or who are waiting to have a stem cell transplant. This is because these vaccines are not 'live' vaccines.

Six vaccines have been approved for use in the UK by the Medicines and Health Regulatory Agency (MHRA):

  • Pfizer/BioNTech
  • Oxford/AstraZeneca
  • Moderna
  • Novavax
  • Janssen (not currently available in the UK)
  • Valneva (not currently available in the UK)

There is a new bivalent COVID-19 vaccine. This is the main vaccine people will now be given. 'Bivalent' means it targets two COVID-19 variants. It targets the original strain and the Omicron variant. It is highly recommended for immunosuppressed people as it gives a better immune response.

Note: the bivalent vaccine does not protect against influenza (flu). As in previous years, flu vaccination will be required in addition to COVID-19 vaccination. If your healthcare team has not yet arranged your flu vaccination for this year, we recommend that you discuss that with them as soon as possible.

The Oxford/AstraZeneca vaccine is being phased out but the Novavax vaccine will be available for those who cannot have the other types of vaccine, for example due to allergies.

How many vaccines do I need?

People who have had, or are going through, a stem cell transplant are named as high risk of severe illness from COVID-19. This means that it is recommended you have extra vaccine doses compared to the general public. It is recommended that:

  • people aged 12 and above who are at high risk should have three primary doses and booster doses three months apart.
  • children aged 5-11 who are at high risk should have three primary doses at a reduced dose and booster doses three months apart.
  • people aged 5 and above who live with someone who is at high risk should have two primary doses and booster doses three months apart.

When should I be vaccinated?

The COVID-19 vaccines are given as multiple injections, a number of weeks apart. This is the recommended vaccine schedule for people aged 5 and above who are at high risk:

  1. First full primary dose.
  2. Second full primary dose eight weeks after your first dose.
  3. Third full primary dose at least eight weeks after your second dose.
  4. First booster dose (sometimes called a fourth dose) around three months after your third dose.
  5. Second booster dose (sometimes called a fifth dose, or the Spring booster) around three months after your first booster.
  6. Third booster dose (sometimes called a sixth dose, or the Autumn booster) around three months after your second booster.

Don't worry about the names 'Spring' and 'Autumn' in reference to the booster doses. This does not mean you could only have these booster doses during the spring and autumn time. Focus on the three months you need between your booster doses.

COVID-19 vaccine graphic

Your medical team knows your individual situation best and will make sure you are vaccinated at the best time. This may be different from the above schedule.

Third full primary dose

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Anyone whose immune system was severely suppressed at the time they were vaccinated may also be offered a third full primary dose. This includes anyone who had a stem cell transplant within the past two years.

Your medical team or GP will invite you for a third full primary dose if you are eligible for one. You will be offered your third primary dose at least eight weeks after your second dose.

In England, if you have received a letter from your GP or hospital doctor inviting you to book a third primary dose, you can book an appointment on the NHS website. You can also find a walk-in clinic.

If you have not been offered a third primary dose and feel you are eligible for one, we recommend you contact your medical team or GP.

Three booster doses

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You can have three booster doses (sometimes known as fourth, fifth and sixth doses, or first, Spring and Autumn booster doses) after your three primary doses. You must wait three months after your previous dose before having another dose.

  • In England, you can book your booster doses on the NHS website.
  • In Scotland, the NHS will contact you to arrange your appointment. You can find more information on the NHS inform website.
  • In Wales, your Health Board will contact you to arrange your appointment. You can read more on the Welsh Government website.
  • In Northern Ireland, you can book your booster doses online.

Blood Cancer UK has further information on the vaccine schedule which you may find useful.

The COVID-19 vaccine is more likely to be effective if you have a functioning immune system. This means that people who have just had their stem cell transplant may need to wait a few months before they can be vaccinated:

  • It has been recommended that anyone who has an autologous transplant (using your own stem cells) receives their first vaccine at least two months after their transplant.
  • Anyone who has an allogeneic transplant (using a donor's stem cells) is recommended to receive their first vaccine three to six months after their transplant.

If you were vaccinated before your transplant, you should be re-vaccinated with a full course after transplant. Read more about re-vaccination below.

Anyone who is experiencing GvHD (graft versus host disease) after their transplant may have their vaccination temporarily delayed to make sure they have the strongest response from their immune system.

Side effects

After receiving the COVID-19 vaccine it may feel sore where the needle went into your arm, or you may feel tired or sick, have a headache or body aches. These common side effects usually wear off within 48 hours. If you experience any other side effects, or they last longer than 48 hours, we recommend you discuss them with your GP or hospital team. 

The COVID-19 vaccines could cause side effects in a few people with allergies to the components of the vaccine. If you have concerns that your own allergies may affect your reaction to the vaccine, you should talk to the medical team about it beforehand. Providing a list of the medications you are currently taking would also be helpful.

Will the vaccines protect me from COVID-19?

The COVID-19 vaccines approved for use in the UK have been tested on healthy volunteers of various ages. They were not initially tested in patients with compromised immune systems, such as stem cell transplant recipients. This means we do not yet know for certain how effective they will be.

Research into COVID-19 vaccines for stem cell transplant patients

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A great deal of research is taking place into this, and Anthony Nolan is part of Blood Cancer UK’s Vaccine Task Force which is tracking all research in this area. Research progress is updated regularly on its COVID vaccine efficacy and blood cancer page.

Early findings suggest that COVID-19 vaccines may be less effective among patients who are undergoing cancer treatment, and that it may take longer for them to develop immunity.

One study has suggested that roughly three quarters of stem cell transplant patients can produce detectable antibodies following their vaccine. The first published results from the OCTAVE clinical trial, which we are supporting through the IMPACT partnership, showed similar findings. Transplant recipients generally produced fewer antibodies than the general population, although their T-cell responses were similar. However, we don’t yet know whether transplant recipients can make enough antibodies to give suitable protection from COVID-19. The OCTAVE trial also found that approximately 1 in 10 patients with a compromised immune system failed to generate any antibodies four weeks after having two doses of COVID-19 vaccine.

In October 2021 the CAPTURE study tested the antibody response in 585 people with cancer. It found that blood cancer patients were less likely to have antibodies after two doses of COVID-19 vaccine than patients with other cancers or people without cancer. When blood cancer patients did have antibodies, the levels were lower against all COVID-19 variants. The CAPTURE study also suggested that a 3rd vaccine dose could effectively boost COVID-19 immunity for vulnerable patients.

There is hope that antibody treatments may be able to reduce the risk of COVID-19 among patients who the vaccines do not work for. We will continue to share findings with you as research develops.

If you are concerned about the level of protection a COVID-19 vaccine has given you, we recommend you discuss this with your healthcare team. They may be able to offer you an antibody test which can help indicate how much protection you currently have from COVID-19. They will also be able to advise you on further steps you can take to protect yourself.

How do the vaccines work? 

The four approved vaccines (from Pfizer, Moderna, AstraZeneca and Janssen) use different approaches to achieve COVID-19 protection. Once injected, these vaccines stimulate our cells to make proteins found only in the strain of coronavirus that causes COVID-19. This does not mean we get COVID-19, but it does trigger our immune system to react to the new protein and develop immunity. So if we then get infected, our body will recognise the virus and will be able to destroy it, without us getting ill.

Will I be prioritised for a vaccine? 

People who have had or are going through a stem cell transplant are named as high risk of severe illness from COVID-19. This means that you'll be prioritised for COVID-19 vaccines, including boosters.

Vaccination centres should also make sure that waiting times are reduced for anyone who is at high risk.

If you feel you, or anyone in your household, have not been appropriately prioritised for a vaccine, your GP or medical team will be able to address this on your behalf.

You may find the following official statements useful when having your discussion:

Will my other medications or treatments impact how effective the vaccine is? 

For the vaccine to work effectively, your body needs a functioning immune system so that it can react to the vaccine and provide immunity.

Treatments such as systemic steroids and immunosuppressant drugs (such as Ciclosporin and ECP), usually given to prevent or treat graft versus host disease (GvHD), are all designed to suppress your immune system. This means they could potentially reduce your body’s response to the vaccine.

As post-transplant patients continue to receive COVID-19 vaccines, it will be important to understand how well they respond to the different types of vaccine, to inform future recommendations. As soon as we have a better understanding from the experts we work with, we will update this information.

Will I need to be vaccinated again after my transplant?

Yes. During your transplant your immune system is replaced, so if you received any COVID-19 vaccines before your transplant it is recommended that you are vaccinated again after your transplant. This is known as 're-vaccination'. If you have had CAR-T therapy, you will also need to be re-vaccinated.

All doses of COVID-19 vaccine, delivered a number of weeks apart, will be required after your transplant to give you maximum protection. Your transplant team will help to arrange this for you. They will assess your individual situation to make sure you are re-vaccinated at the most suitable time for you.

Your transplant team should use this letter template (PDF, 125KB) to inform your GP of your need to be re-vaccinated after your transplant. This template has been approved by NHS England.

In some cases your transplant team may be able to arrange your re-vaccination themselves, but they still should let your GP know.

This official recommendation for patients to be re-vaccinated after stem cell transplant is in the Public Health England guidance for healthcare professionals known as the Green Book. The reference to re-vaccination is in Chapter 14a on page 33. You may find this useful when discussing re-vaccination with your transplant team.

What else can I do to stay protected? 

Even if your current situation suggests you may not have a strong response to the vaccine, it is still important for you to have the vaccine because even some protection is better than none.

After vaccination it can take some time to develop an immune response to COVID-19, and the level of protection for stem cell transplant recipients is not yet fully understood. So when you have had your vaccine, you should still remain careful and maintain the measures you have been following to protect yourself during the pandemic. This includes wearing a face mask, maintaining social distancing and regularly washing your hands.

This is particularly important if you live in an area where COVID-19 cases are high.

Treatment for COVID-19

Some high risk patients (previously called 'clinically extremely vulnerable') who test positive for COVID-19 may now be offered treatment at home or in the community to help stop severe illness. These high risk patients include those who:

  • have had a stem cell transplant in the last 12 months
  • have had a stem cell transplant at any time and have GvHD
  • have had CAR-T cell therapy in the last 2 years
  • have sickle cell disease
  • are being treated, or have recently completed treatment, for a blood cancer
  • have a non-malignant haematological disorder (such as aplastic anaemia and paroxysmal nocturnal haemoglobinuria) and have had certain treatments that affect B-cells within the last 12 months
  • have had chemotherapy or radiotherapy in the last 12 months.

Antiviral and antibody treatments help to prevent hospitalisation and serious illness in those most at risk. They are especially important for those who have compromised immune systems.

Molnupiravir (Lagevrio)

Molnupiravir (also known as Lagevrio), an antiviral treatment, is in the form of a capsule you swallow and can be taken at home. If you are prescribed molnupiravir, this can be delivered to your home or someone can collect it for you.

You should start taking molnupiravir within 5 days of starting to experience COVID-19 symptoms. The recommended dose is four 200mg capsules, every 12 hours for 5 days.

If you're not a part of the high risk category, you can still access molnupiravir as part of a national trial called PANORAMIC. Eligible patients - those over 50 or with underlying health conditions - will be contacted by the study team or a healthcare professional (e.g. GP or research nurse) after receiving their positive test result to discuss the option of taking part. Not all trial participants will be offered molnupiravir. You can find out more at: panoramictrial.org

Starting molnupiravir today. Apart from a little hiccup, the new scheme for high risk people in regards to priority PCR and antiviral medication is amazing, fast and efficient.

Carly, who had a stem cell transplant in 2019 and was successfully treated for COVID-19 at home in January 2022

Sotrovimab (Xevudy)

Sotrovimab (also known as Xevudy) is a monoclonal antibody therapy given to patients through a drip in their arm.

You will be able to access sotrovimab in community settings, like a local hospital or healthcare centre, and it will be given to you by a doctor or nurse. You can also access this treatment if you are hospitalised with COVID-19 and at high risk of severe illness.

Another antibody treatment called Ronapreve has also been made available, both in and out of hospital. It is not being widely used as it is less effective against the Omicron variant.

Nirmatrelvir and ritonavir (Paxlovid)

Nirmatrelvir and ritonavir make up the antiviral medicine Paxlovid. This treatment is in the form of tablets you swallow and can be taken at home. If you are prescribed Paxlovid, it can be delivered to your home or someone can collect it for you.

You should start taking nirmatrelvir and ritonavir within 5 days of starting to experience COVID-19 symptoms. The recommended dose is two tablets of nirmatrelvir and one tablet of ritonavir twice a day, morning and evening. You should take the three tablets at the same time, and should swallow them whole. You can take them with or without meals. This course of treatment lasts for 5 days.

Paxlovid is not suitable for people with certain health conditions, or those taking certain medications. This will be discussed with you before you are prescribed medication for COVID-19.

If you're not a part of the high risk category, you can still access Paxlovid as part of a national trial called PANORAMIC. Eligible patients - those over 50 or with underlying health conditions - will be contacted by the study team or a healthcare professional (e.g. GP or research nurse) after receiving their positive test result to discuss the option of taking part. Not all trial participants will be offered Paxlovid. You can find out more at: panoramictrial.org

Tixagevimab and cilgavimab (Evusheld)

Evusheld is made up of two long-lasting antibodies called tixagevimab and cilgavimab. It is a preventative treatment and should protect you against COVID-19 for up to six months.

This treatment is for people who are unlikely to have developed good immune response from the COVID-19 vaccinations, or are unable to have the vaccines at all.

Evusheld was licensed for use in the UK by the Medicines and Health Products Regulatory Agency (MHRA) in March 2022. However, the government has indicated that there is not enough evidence that Evusheld is effective against the Omicron variant. Therefore, Evusheld is not currently available from the NHS in the UK. Anthony Nolan is campaigning with other charities and clinicians to urge the government to make Evusheld available from the NHS.

Although Evusheld is not currently available from the NHS, it is now available privately in the UK. Blood Cancer UK explains how it can be accessed and looks at the latest research into its effectiveness.

It is still important to have your full course of COVID-19 vaccinations even if you are offered Evusheld in the future.

You can read more about Evusheld on the Blood Cancer UK website.

How do I access these treatments?

The full process is explained here for:

If you're in the high risk category the NHS will send you a letter – in England the letter looks like this.

You will also be sent either a lateral flow test or PCR test from NHS Test and Trace – in England this will be a lateral flow test. This is to keep in case you start to show symptoms of COVID-19. It will speed up the process of testing and accessing treatment.

Note: in England you must only use a lateral flow test that has been sent to you by NHS Test and Trace. Do not use a test that you have bought, e.g. from a supermarket or pharmacy, because you will be unable to report the result. If you need more, you can order free lateral flow tests on GOV.UK or by calling 119.

If you start to show symptoms of COVID-19, you should complete the test and report a positive result as soon as possible.

You must report a positive test result online or by calling 119 so the NHS knows to get in touch with you to discuss treatment options.

In England, if your test is positive, you will be contacted by your hospital consultant or NHS bodies known as COVID-19 Medicines Delivery Units (CDMUs) who can prescribe antibody treatments which can, if used early in infection, help to prevent severe disease.

In Scotland, Wales and Northern Ireland, you will receive these treatments from the NHS in the community through local health boards and trusts.

If your test comes back positive, you should be contacted by the NHS within 24 hours to discuss treatments. If this doesn’t happen, you are advised to make contact for a telephone assessment.

It’s very important to understand what to do if you are considered high risk and test positive for COVID-19, so you can be treated as soon as possible.

  • If you think you are considered high risk but have not yet been contacted by the NHS about this treatment, we recommend that you ask your GP or medical team to contact your local CDMU or Health Board/Trust to check.
  • If you have any difficulty obtaining this treatment, or if you need to confirm your eligibility, contact your GP or medical team as soon as possible.
  • If you are classed as high risk and are admitted to hospital with COVID-19, make sure that doctors are aware so you may be considered for these treatments.

You can find out more about the latest antibody and antiviral treatment developments, including how these treatments work, on the Blood Cancer UK website.

Shielding

Should I still be shielding?

As an adult you are at very high risk of severe illness from COVID-19 if you:

  • are currently being treated for a blood cancer or blood disorder
  • had a stem cell transplant within the last 12 months
  • are taking medication to suppress your immune system, including treatment for graft versus host disease (GvHD).

If you fall into this high risk (previously called 'clinically extremely vulnerable') category, you were previously advised to follow ‘shielding’ measures to keep yourself safe from COVID-19. Shielding advice has now been withdrawn. Instead, anyone at high risk is advised to discuss the precautions you follow with your own medical team.

Each government has published advice for anyone at high risk in:

If your child had a stem cell transplant, their medical team will advise you whether they are at very high risk of severe illness from COVID-19. You can read further guidance for parents on the British Society of Blood and Marrow Transplantation and Cellular Therapy (BSBMTCT) website.

Keeping yourself safe

In response to continuing high levels of COVID-19 in the community, Anthony Nolan is urging the UK governments to continue to support high risk people who were previously asked to shield.

In England, the government has recently published specific guidance for people whose immune system means they are at higher risk. You are advised to:

  • make sure you have had all the vaccines you are eligible to receive, including boosters
  • continue to follow any condition-specific advice you may have been given by your medical team
  • avoid meeting with someone who has tested positive for COVID-19 for 10 days after their positive result
  • avoid meeting people who have any symptoms of COVID-19 or other respiratory infections
  • work from home if you can – if you cannot work from home, speak to your employer about what temporary arrangements they can make to reduce your risk
  • wait until 14 days after another person’s most recent dose of a COVID-19 vaccine before being in close contact with them
  • avoid enclosed crowded spaces
  • practise social distancing if that feels right for you and your friends
  • ventilate your home by opening windows and doors to let fresh air in
  • ask friends and family to take a rapid lateral flow antigen test before visiting you
  • ask home visitors to wear face coverings
  • wash your hands regularly and avoid touching your face.

We recommend that you discuss your situation with your own medical team before making any changes to the precautions you follow. Your team has the fullest understanding of your own medical history and the potential impact COVID-19 could have on your health.

In Scotland, 'Distance Aware' lanyards and badges are available for free in libraries and Asda stores, and for a small postage fee from some charities listed on the Scottish Government website. Blood Cancer UK also offers similar badges for a postage fee and voluntary donation.

If you have any concerns about returning to work, school or further education, either as a stem cell transplant recipient or as the parent or guardian of a patient, we recommend you discuss the specifics of your situation with your employer or educational support staff. They have a responsibility to ensure you or your child can study safely. Further information can be found in the work section below.

What if I'm not in the high risk group?

Although many restrictions have been eased across the UK, it's still important to protect both yourself and people who are at high risk of COVID-19. We recommend people still wear facemasks in crowded indoor spaces, including public transport, and maintain safe social distancing where possible. 

Public Health England has published guidance on how households can cope with a possible COVID-19 infection. We advise you follow this guidance no matter where you live in the UK.

Keep in touch with your medical team too as they may want to change the way they offer their follow-up appointments. This will be to limit the number of times you have to physically attend the hospital and so you can minimise your travel, particularly on public transport.

If you have any specific questions about how COVID-19 could affect your own situation, please contact someone from your medical team. They will be happy to talk to you about any concerns you may have.

Restrictions and guidance

What are the current restrictions and guidance where I live?

There are no longer COVID-19 legal restrictions in place anywhere in the UK, but guidance remains in place for each nation. You can read the latest updates and find links to read more about current guidance below.

  • England 
    • Free lateral flow tests will be sent to those who are at risk of severe illness from COVID-19. You should use these tests only if you have symptoms. If a lateral flow test confirms that you have COVID-19, you may be eligible for treatment - we have information on how to access treatment here.
  • Wales 
    • The final COVID-19 legal restrictions have been removed. It is no longer a legal requirement to wear face coverings in health and care settings.
    • The Welsh Government recommends simple steps to protect yourself from COVID-19 including staying up to date with vaccinations, self-isolating if you have COVID-19 symptoms and maintaining good hand hygiene.
  • You can read the full guidance for Scotland on the Scottish Government website.
  • You can read the full guidance for Northern Ireland on the Northern Ireland Government website.

If you are a stem cell transplant recipient and you have any concerns about your child potentially contracting COVID-19 at school, we recommend you discuss this with their school. They have a responsibility to ensure your child can study safely and that you are not put at risk by their attendance at school.

If you have any other concerns, please contact your medical team who will be able to advise on the most suitable course of action for you.

My stem cell transplant

How will my treatment be affected?

Your transplant team are likely to change how they manage your medical appointments. Some consultations will be carried out either over the phone or by video. This will limit the amount of face-to-face contact needed and reduce your need to travel on public transport.

If you do need to attend in person, steps will be put in place to reduce the time spent in waiting rooms. Everyone will be asked to attend appointments without family members or carers if possible.

Where possible you should also try to avoid picking up your prescriptions in person. This can be done by ordering through online home delivery services, asking for help from family and friends or NHS volunteer services.

Will my stem cell transplant still go ahead?

The stem cell transplant process significantly weakens the immune system, making patients more vulnerable to contracting infections including COVID-19. During the first peak of the COVID-19 outbreak, some stem cell transplants were delayed to help protect patients and enable vital NHS resources to be directed to where they were most needed.

Most autologous transplants and allogeneic transplants where the situation was deemed non-urgent were affected.

Despite the current level of COVID-19 infections, hospitals are currently able to cope with the demands of treating patients. Some non-essential treatments have been temporarily suspended but this is not currently affecting stem cell transplants. We keep in regular contact with all the UK’s transplant centres and continuously monitor the situation.

At Anthony Nolan, we are working closely with every transplant centre in the UK and our suppliers to minimise the disruption COVID-19 may cause. This includes any potential disruption as countries restrict travel to and from the UK to limit the spread of the new COVID-19 variant.

Where possible, we are searching for multiple potential stem cell donors, including those from umbilical cord stem cells, and making sure we can still import donated cells from across the world. This will allow us to continue our life-saving work.

If you have any specific concerns, please contact your transplant centre. They will be in the best position to advise based on your medical condition, where your stem cells are coming from and the impact of COVID-19 on local hospitals.

More information about COVID-19 and how to reduce the risk of infection is available from the NHS website.

Work

Can I return to work?

It is your employer’s responsibility to make sure you can work safely during the COVID-19 pandemic.

If you cannot work from home, talk to your employer to ensure suitable measures have been taken to protect you from COVID-19 at your workplace. If you have a union representative, they will be able to raise any concerns on your behalf.

Anthony Nolan has joined a group of charities calling on employers to put protective measures in place for staff vulnerable to COVID-19. These #SafeAtWork measures are explained in a letter which you can share with your employer.

If you are unable to work, you may also be eligible for:

Anyone at high risk who cannot work from home will require a sick note from your doctor to be eligible for SSP or ESA.

Citizens Advice and turn2us have further information on benefits you may be entitled to.

Our Going back to work after your stem cell transplant and Work & stem cell transplant: Information for Employersguides for patients and employers provide further information to make sure you get the support you are entitled to.

If you have any concerns about any of this, your medical team will be able to advise on the most suitable course of action for you. 

Support

We're here to support you with any questions or worries you have about COVID-19 as a stem cell transplant patient or family member. Contact our helpline on 0303 303 0303 or patientinfo@anthonynolan.org, Monday – Friday, 9am – 5pm.

You might also find the below helpful:

Information first published: 11/03/2020
Last update: 16/11/2022

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