Coronavirus (COVID-19) and your stem cell transplant

Sofia Lingard, daughter of Victor Douglas, patient

UPDATED 29 Sep 2023

Latest updates:

  • An 'Autumn booster' dose of COVID-19 vaccine is now available across the UK. You'll be invited to receive a booster if you are eligible. You may also be able to book your booster online - we've further info in our Vaccines section.
  • After your transplant, your transplant team can use this new letter template to explain to your GP why you need to be re-vaccinated.
  • If your GP cannot obtain the COVID-19 vaccine doses you require, ask your transplant team to contact your local NHS vaccination service directly.

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.

These vaccines are currently approved for use in the UK by the Medicines and Health Regulatory Agency (MHRA):

  • Pfizer/BioNTech (Comirnaty)*
  • Moderna (Spikevax)*
  • Novavax (Nuvaxovid)
  • Sanofi/GSK (VidPrevtyn Beta)

*These are bivalent vaccines, which means they target two COVID-19 variants – the original strain and the Omicron variant. Bivalent vaccines are recommended for immunosuppressed people as they give a better immune response, so they are now used for primary doses and booster doses. Note: bivalent vaccines do not protect against influenza (flu).

The Novavax (Nuvaxovid) vaccine is available for those who cannot have the other types of vaccine, for example due to allergies.

The Sanofi/GSK (VidPrevtyn Beta) vaccine is primarily used for people aged over 75. It contains animal product, so it is not appropriate for some religious groups.

How many vaccines do I need?

People who have had, or are going through, a stem cell transplant or Car T-Cell therapy 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.
  • children aged 6 months-4 years who are at high risk will be offered two doses of vaccine, with 8-12 weeks between doses. Further info is here.
  • children aged 5-11 who are at high risk should have three primary doses at a reduced dose and booster doses.
  • people aged 5 and above who live with someone who is at high risk should have two primary doses and booster doses.

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 primary dose.
  2. Second primary dose eight weeks after your first dose.
  3. Third primary dose at least eight weeks after your second dose.
  4. Seasonal booster doses (sometimes called a 'Spring booster' or 'Autumn booster'). Your first booster dose will be around three months after your third primary dose. Your next booster doses will be three to six months apart.

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 period you need between your booster doses.

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.

Vaccination of children aged 6 months-4 years who are at high risk began in June 2023 in England. Parents should wait to be contacted before coming forward. Further info is here.

Primary doses

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Your medical team or GP will invite you for three primary doses of COVID-19 vaccine if you are eligible.

You will be offered a second primary dose at least eight weeks after your first dose, and a third primary dose at least eight weeks after that.

In England, you will receive a letter from your medical team or GP which invites you to have a primary dose and tells you where to go to receive it. This will be a local vaccination site.

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

Booster doses

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You can have booster doses of vaccine (sometimes known as a 'Spring booster' or 'Autumn booster') after your three primary doses. You must wait three to six months after your previous dose before having another booster.

Boosters are only available during certain times of the year, sometimes known as 'seasonal vaccination periods'.

An 'Autumn booster' is now available across the UK. Anyone who has had a stem cell transplant or CAR T-Cell therapy will be invited to receive a booster 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?

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.

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.

A major study is taking place to discover whether lower antibody levels can accurately predict the risk of COVID-19 infection in patients who are clinically vulnerable. The two-year Stravinsky study is funded by the National Institute for Health and Care Research, and will be run at 11 sites including hospitals in Birmingham, Cardiff, Glasgow and London.

It is currently recruiting 2,600 patient volunteers, including people who have had a stem cell transplant. You can volunteer to take part in the Stravinsky study, or find out more, here.

How do the vaccines work? 

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 as 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-Cell 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. The NHS currently offers three doses of COVID-19 vaccine, three months apart, to stem cell transplant and CAR T-Cell therapy recipients.

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 (also known as a Patient Specific Direction Form) to inform your GP that you need to be re-vaccinated after your transplant. This template has been approved by NHS England.

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.

If your GP is unable to obtain the vaccination doses you require, ask your transplant team to contact your local NHS vaccination service (also known as an Integrated Care Board) directly. Their contact details are listed here.

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 when COVID-19 cases are high.

Treatment for COVID-19

The following treatments are suitable for people at high risk of COVID-19:

*under review

**not available from the NHS in the UK

Some high risk patients (previously called 'clinically extremely vulnerable') who test positive for COVID-19 may 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 24 months
  • 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.

Nirmatrelvir and ritonavir (Paxlovid)

Nirmatrelvir and ritonavir make up the antiviral medicine Paxlovid and is a first-line treatment.

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 Paxlovid 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

Sotrovimab (Xevudy)

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

It is only prescribed to patients if other COVID-19 treatments have been deemed unsuitable for them.

If sotrovimab is prescribed, you will be able to access it in community settings, like a local hospital or healthcare centre, and it will be given to you by a doctor or nurse. You may also be able to 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.

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. This is a third-line treatment.

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.

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

Remdesivir (Veklury)

Remdesivir (also known as Veklury) is an antiviral medicine given to patients through a drip in their arm. This is a second-line treatment.

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

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 a good immune response from the COVID-19 vaccinations, or are unable to have the vaccines at all.

However, NICE (National Institute for Health and Care Excellence) said in February 2023 that there is not enough evidence to show that Evusheld is effective against currently circulating COVID-19 variants. You can read more about this decision on their website.

Therefore, Evusheld is not available from the NHS in the UK. Despite NICE’s guidance, Evusheld is available privately. With little protection against new variants, we strongly recommend consulting the advice of a clinician before accessing treatment.

Anthony Nolan is campaigning with other charities and clinicians to urge the government to commit to rolling out alternative protective treatments for our patients as they become available.

How do I access these treatments?

The full process is explained here for:

Access to treatment in England changed on Tuesday 27 June 2023

You should have received a letter in the post explaining these changes. If you didn't receive a letter, don't panic. You can still access treatment if needed.

Read an example letter.

If you test positive for COVID-19 after Tuesday 27 June, you will need to either:

  • contact your medical team
  • contact your GP
  • call 111 (999 in an emergency)

You will then be assessed for treatment.

Make sure you have lateral flow tests at home so you can use one immediately if you need to. You can order free lateral flow tests on GOV.UK.

It’s 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 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.

How can I support research into COVID-19 treatment for stem cell transplant patients?

Pharmaceutical company AstraZeneca is recruiting people with weakened immune systems, including stem cell transplant patients, to take part in its ongoing Supernova study.

The study is investigating whether a drug (known as a pre-exposure prophylactic) can help protect people with weakened immune systems from contracting COVID-19.

Further details, including trial locations and contact details, are available on the Supernova trial 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 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
  • 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 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 face coverings in crowded indoor spaces, including public transport, and maintain safe social distancing where possible. 

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.

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.

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 lifesaving 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 is part of 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 Employers guides 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:

  • Anthony Nolan provides Grants of up to £250 to help cover costs linked to stem cell transplant and recovery from transplant.
  • Our Telephone Emotional Support Service, run by a team of wellbeing specialists including qualified psychologists at Working to Wellbeing, allows patients and family members to talk to someone about their concerns and wellbeing. Find out more by emailing us: patientinfo@anthonynolan.org  
  • You can connect with other patients and families to share advice and support on our Patients & Families Forum or our Patients & Families Facebook page
  • Our mental health information gives extra advice on managing your emotional wellbeing before, during and after your transplant.

Information first published: 11/03/2020
Last update: 29/09/2023

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