Antivirals for COVID-19

We know many patients and their families remain concerned about the risk of severe illness were they to catch COVID-19. This page sets out the developments in the treatment of COVID-19 and how they would be used to treat leukaemia patients, if known.

Although treatments for COVID-19 continue to improve all the time, we encourage everyone to continue to take precautions to reduce the risk of catching COVID-19, such as having COVID-19 vaccines.

From December 16th 2021 the NHS will be offering new treatments to people who catch coronavirus (COVID-19) who are at highest risk of becoming seriously ill. This is with the hope of managing potentially severe COVID-19 symptoms in this group and reducing the risk of becoming seriously ill. 

Please note the process of testing and being referred to the COVID Medicines Delivery Units is different in Scotland, Wales and Northern Ireland from the process in England. If you live in Scotland, Wales or Northern Ireland please read the separate heading below. Eligibility criteria and available treatments remain the same across the UK.

Antiviral pathway for immunocompromised patients

What treatments are available?

On the 28th of January, the list of treatements available to high risk patients who test positive for COVID-19 has expanded.
There will now be 4 types of COVID-19 treatment available:

  1. PF-07321332 (also known as nirmatrelvir or Paxlovid an antiviral) given with ritonavir (also an antiviral)
  2.  sotrovimab (Xevudy) – a monoclonal antibody treatment
  3. Remdesivir (an antiviral)
  4. molnupiravir (Lagevrio, an antiviral)

Note: You may have read concerns about the combination of Paxlovid with ritonavir and how it reacts with other drugs. Ritonavir is added to boost the Paxlovid, but the way ritonavir works mean it might also increase the amount of other drugs in your system too. Therefore, it may be decided that this is not an appropriate treatment for you due to the risk of interactions with any leukaemia treatments you are on. If you unsure why a decision has been made, make sure to ask the doctor assessing you. 

Equally, if you are prescribed these treatments, do not be afraid to ask if your leukaemia treatment will be affected by the medicine. The doctors should be happy to explain their decision making to you.

Who is eligible?

Everyone who is eligible is receiving a letter to let them know. This letter is not a guarantee you will be treated with these treatments, as you will still be assessed by a doctor if you fall ill with COVID-19. There are various health conditions that make people eligible for the new treatments on the NHS. This has been decided by an independent group of experts advising the government and applies to all 4 UK nations. Below is the list most relevant to leukaemia patients of eligible hematological malignancies:

  • Allogeneic HSCT recipients in the last 12 months or active graft versus host disease (GVHD) regardless of time from transplant
  • Autologous HSCT recipients in the last 12 months
  • Individuals with haematological malignancies who have received CAR-T cell therapy in the last 24 months, or radiotherapy in the last 12 months
  • Individuals with haematological malignancies receiving systemic anti-cancer treatment (SACT) within the last 12 months.  A full list of what counts as SACT can be found here on pages 11 and 12.
  • All people who do not fit the criteria above, and are diagnosed with:
    • myeloma (excluding MGUS)
    • AL amyloidosis
    • chronic B-cell lymphoproliferative disorders (chronic lymphocytic leukaemia, follicular lymphoma)
    • myelodysplastic syndrome (MDS)
    • chronic myelomonocytic leukaemia (CMML)
    • myelofibrosis
  • Individuals with non-malignant haematological disorders (for example, aplastic anaemia) receiving B-cell depleting systemic treatment (for example, anti-CD20, anti-thymocyte globulin (ATG) and alemtuzumab) within the last 12 months
  • While there is evidence that individuals with chronic myeloid leukaemia (CML) in molecular response or receiving first or second line tyrosine-kinase inhibitor (TKI) therapy demonstrate good vaccine responses, all CML patients have now been included in the eligibility for COVID-19 treatments for benefit of the doubt. 
  • Individuals with non-malignant haematological disorders (for example, aplastic anaemia or paroxysmal nocturnal haemoglobinuria) receiving B-cell depleting systemic treatment (for example, anti-CD20, anti-thymocyte globulin (ATG) and alemtuzumab) within the last 12 months

For a full list please see the relevant NHS guidance here. If you are not sure if you are eligible please ask your healthcare team.

Note: We are receiving reports that some people not on this list are being sent letters to say they might be eligible. A letter is not a guarantee you will receive the treatment. You will be assessed if you test positive before being given a treatment. Also, clinicians are able to add people to the list if they think they should be eligible.

I’m recently diagnosed with leukaemia, will I get a letter if I am eligible?

Many people who are eligible have been invited by receiving a letter and a priority PCR kit, designed to be more quickly processed to ensure you get treatment as soon as possible. Make sure to read the letter carefully, as it explains what to do if you test positive and what to expect.

However, we are aware of reports that many people have not been contacted. If you have been diagnosed since the 15th of November, you may have been missed as the list of people to write to was created before this date. Others expected to receive a letter but have not received it. Please see below what to do if you haven’t received the letter.

How can I access these treatments, and what to expect if I test positive?

  1. If you have symptoms, take either a lateral flow test or a priority PCR test as soon as possible. 
  2. Register the results of your lateral flow on the www.gov.uk website or return your PCR test following the instructions in your kit.  
  3. After receiving or registering your result, if you are known to be high risk, the NHS should contact you within 24 hours to discuss treatment. However, to speed the process up, we recommend that you call 111 or your GP to inform them that you’ve tested positive and believe you are eligible for antivirals due to being high risk. Both 111 and the GP can refer you to the Covid Medicines Delivery Unit (CMDU). 
  4. Following referral, a doctor at the local CMDU will then call you and assess you for treatment. They will advise if you should be treated and if so, where you might need to go for treatment. Be prepared to receive several phone calls, including potentially from a nurse at the CMDU, as well as a doctor.
  5. Following a clinical assessment if you are eligible to receive monoclonal antibodies in tablet form, a pharmacist will contact you to arrange your prescription. Your prescription can be delivered to you by courier so that it arrives as soon as possible. 
  6. The CMDU doctor or pharmacist might ask you questions about the treatments you are currently taking, and so we would recommend compiling an up-to-date list to be prepared should you test positive for COVID-19.

Note: Being eligible for treatment does not guarantee that you will receive it. COVID treatments are only appropriate for people who are not showing signs of improvement. If you are assessed and told you do not need treatment, but you notice your symptoms deteriorating after this, please get back in touch with the CMDU or the person who made the initial referral. You are unlikely to be able to request a particular treatment, but if you cannot travel to a CMDU, please make this clear to the assessing doctor. 

If you are concerned about a decision made for COVID treatment, please contact your clinical nurse specialist or haematologist and ask them to speak to the CMDU.

Which treatment will I get and where will I get it?

If you are eligible, the NHS will advise which treatment is suitable for you.

Monoclonal antibodies are given to you through a drip in your arm (infusion) or by injections. There is a list of locations that are approved to deliver COVID treatments, called COVID Medicines Delivery Units (CMDUs). A list can be found here.

If this is the most appropriate treatment for you, you will get instructions on where to get it and how to get there and back safely.

If you are given molnupiravir, it normally comes as oral capsules which can be taken at home.

A hospital pharmacy will usually arrange for the medicine to be delivered to you by courier or it can be collected by someone else such as a friend, relative or NHS volunteer responder.

What should I do if I believe I am eligible for treatments but have not received a PCR kit at home

We have become aware of many patients who have not received a letter and/or a kit. We understand this is a really frustrating and worrying time for you and we are doing all we can to find solutions to this with the Government and with the NHS. If any part of the advice below changes, we will update this blog. 

It has recently come to our attention that NHS digital have acknowledged a coding error which omitted a large number of CLL patients from getting their priority kits and letters.  This has since been corrected and eligible CLL patients in England should now have received a priority PCR kit in the post.

If you are eligible, the letter is not essential to accessing treatment. The important thing is to ensure you take a test as quickly as possible after you start feeling unwell. If you still have not got a priority PCR kit, you should call 119 to request a standard home PCR kit; you should be allowed to do this before you have symptoms by explaining it is because you are eligible for COVID treatments but you have been missed from the list. Keep it at home and replace it if you use it.  If a test then comes out positive, you should follow our instructions from point 4 in the question “How do I access treatment?” above.

There are steps you can take to help make sure you are considered for treatments:

  • See if there is a problem with your coding. 
    • GPs use special codes, called SNOMED codes, to mark records with illnesses people are affected by. There is a code for each leukaemia type, codes for particular treatments and a code for people at high risk of severe COVID illness. 
    • If your codes are incorrect, ask your GP to correct them. This will ensure your GP is aware of your vulnerability in any future conversations you have
  • The NHS has told us that, at the time of writing, they have no plans to send out further letters on masse. You can ask your consultant or clinical nurse specialist to send you the letter, but they cannot send you a priority PCR kit. It may help you to get the treatment later if your clinical team are aware that you have not been identified by the national system.
    •  If you would like to see the contents of the letter, you can download it here. 

If you need further advice on any aspect of this process, please get in touch with us.

I live in Scotland, Wales or Northern Ireland, how is the process different?

If you live in Scotland, Wales or Northern Ireland and are eligible for treatments you will not be sent a priority PCR kit in the post. Instead you can book your own PCR test appointment or kit on the Government website and state that you are high priority here.

This will flag in the system that you believe you are high risk and should trigger a phone call from the Covid Medicines Delivery Unit (CMDU) in your area if you test positive. If you do not get this phone call within 24 hours of receiving a positive result you should contact your GP or 111 for a referral to the CMDU, or contact the CMDU directly. They will then carry out a clinical assessment at the CMDU to determine if any of the available treatments are suitable for you.

What are monoclonal antibodies?

Monoclonal antibodies are antibodies that are created in a laboratory. They are often used in the treatment of cancer, where they are engineered to attach to a protein on the surface of a cancer cell; for example, rituximab is one type used in the treatment of leukaemia. They have also been developed to attach to the COVID-19 virus. When a monoclonal antibody attaches to a COVID virus particle, it encourages the immune system to destroy it, making it more likely that the person will get rid of the virus.

What are antiviral drugs?

Antiviral drugs act directly on the virus to eliminate it, much like an antibiotic for bacteria. Molnupiravir, the antiviral against COVID-19, works by mutagenesis. This means that it causes multiple mutations in the genome of the COVID-19 virus, stopping it from being able to replicate and make more COVID-19 viruses.

Options for those who do not fit into the criteria outlined above

If you are not eligible for COVID-19 treatments on the NHS, you might be able to take part in a study called PANORAMIC. Once you are experiencing symptoms and test positive for COVID-19 on a PCR test you can then enroll in the study here to receive treatments. To be eligible for this study you have to be aged 50 or over, or aged 18 or over with a preexisting condition, including immunosuppression, outlined here.

Summary of other treatments

It is important that we have as wide a variety of treatments as possible. There are other treatments available for those who fall seriously ill and go to hospital. 

All taken from the NICE guidelines for treatment of COVID-19, unless otherwise stated and can be found here

  • Dexamethasone – a steroid treatment, commonly used to treat some leukaemias. Is recommended to treat COVID-19 in people who need oxygen to help them breathe.
  • Remedisivir – an antiviral drug which was hoped to work very well at the start of the pandemic, but since has been shown to have more limited use. It is now only recommended in limited circumstances.
  • Ritanovir with nirmatrelvir (Paxlovid) – as well as being available for mild illness, you get prescribed this ocmbination if you are admitted to hospital. The same precuations outlines in drop down box 1 apply.

Please be aware that some people have reported receiving scam texts relating to ordering PCR tests. You should not currently have to pay for any COVID-19 PCR or lateral flow tests.

If you have questions, you can contact our support team by calling 08088 010 444, or emailing support@leukaemiacare.org.uk.

Page published on: 22nd October 2021

Page last updated on: 1st August 2022