From 30th June 2023 you will no longer be automatically contacted by the NHS following the registration of a positive test. Instead, patients are required to refer themselves to their GP, secondary care team or health board following a COVID-19 positive test. 

Furthermore, CMDUs (Covid Medicines Delivery Units) have also now closed down, and you will receive covid treatments via your GP, secondary care team or health board instead. 

This information applies to England. There may be similar changes to the process in Scotland and Northern Ireland, but we are awaiting confirmation. In Wales the process appears to be staying the same. 

However, regardless of where you live in the UK, we recommend all patients now make initial contact with your healthcare team to inform them of your positive COVID-19 test and discuss treatment options, rather than waiting for them to call you.

In March 2023 NICE announced the decision to withdraw NHS access to some of the COVID-19 treatments on offer. The section below explains which treatments are still available on the NHS.

The table outlines which treatments are now going to be available on the NHS to patients following NICE’s decision in March, and which treatments will be withdrawn.

In the community (non-hospital) setting, for the treatment of immunocompromised people with mild COVID-19, access to molnupiravir and remdesivir will be withdrawn. This means that paxlovid will continue to be available, as will sotrovimab for those who are unsuitable for paxlovid. NICE also looked at two treatments which weren’t previously approved in this setting, tixagevimab plus cilgavimab (Evusheld) and casirivimab plus imdevimab, but decided not to recommend these for NHS use. 

In the hospital setting, the treatments remdesivir and casirivimab plus imdevimab were being used to treat patients with more serious COVID-19, but NICE has decided to withdraw access to both of these treatments. Instead, NHS clinicians who are treating patients in hospital with supplemental oxygen will now have access to tocilizumab and baricitinib. There have been no additional treatments recommended or removed for those in hospital without oxygen. 

It is worth noting that some standard hospital treatments which weren’t looked at by NICE in this appraisal, such as dexamethasone, will still be available. 

The role of the National Institute for Health and Care Excellence (NICE) in England is to decide if a treatment is cost-effective and therefore suitable to be used on the NHS. They do this by comparing the treatment’s effectiveness and price to existing treatments, if there are any. The process therefore involves looking at clinical trial data and information on the cost of delivering the new drug. NICE also takes into account comments from patient and clinical experts on the impact the drug would have on patients. A committee of people at NICE then makes a recommendation based on the evidence they have.

NICE has decided that the treatments to be withdrawn are not clinically and/or cost effective enough to meet the criteria for use on the NHS anymore. Most of the clinical evidence for these treatments is highly uncertain because it comes from studies done before the dominant Omicron variants of COVID-19. As such it is very difficult to know how well the treatments work against the current variants.

In addition, the cost-effectiveness estimates are highly dependent on how well each treatment works compared with standard care, hospitalisation and mortality rates. Hospitalisation and mortality rates are lower with Omicron variants than earlier variants in the pandemic. These lower rates increase the cost-effectiveness estimates, meaning that some treatments will be too expensive for recommending use on the NHS at this current moment in time. 

As you have seen, the antiviral treatments Paxlovid (nirmatrelvir/ritonavir) and sotrovimab will be the only treatments which will continue to be available to eligible patients outside of the hospital setting and whilst they are experiencing relatively mild symptoms. This reduces the current amount of treatments on offer in this setting by half (withdrawing access to remdesivir and molnupiravir). 

We at Leukaemia Care are concerned about this decision to reduce access to a range of options which can meet different patient needs. Paxlovid is a drug which cannot be taken alongside many leukaemia treatments, giving some patients only one treatment option left (sotrovimab). We are disappointed that the NICE committee decided not to approve more treatments which are less likely to interact with leukaemia treatments.

Leukaemia Care’s CEO, Zack Pemberton-Whitely commented “We are disappointed with the decision by NICE to remove access to the majority of COVID-19 treatments currently available to patients on the NHS. Many of these patients remain at higher risk of COVID-19, as they may have responded less well to vaccination. NICE’s decision today removes a vital safety-net. This is a significant step back and puts leukaemia patients, for whom the pandemic is far from over, at an even greater risk of serious illness.”

We encourage all those eligible for COVID treatments to keep testing and reporting any positive results.  

1. You cannot take Paxlovid if you are taking: Venetoclax
2. Medicines that ‘may not mix’ with Paxlovid (your haematology clinicians should be consulted for individual advice here) are:

dasatinib, nilotinib, vincristine, vinblastine, ibrutinib, ivosidenib, anticoagulants and/or anti-fungal medicines such as itraconazole and voriconazole

Clinicians are responsible for whether to treat a patient who is taking any of the above treatments with COVID-19 treatments and how to manage this. If you are unsure about the application of this in your case, please consult your doctor. Please do not stop your leukaemia treatment without first consulting a doctor.

There have been no changes to the eligibility list for COVID-19 treatments. Below is the original 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: Being on this list is not a guarantee that you will receive treatment, as you will also be assessed by a clinician to better understand your symptoms.  Also, clinicians are able to add people to the list if they think they should be eligible. 

There have been some significant changes to the process of accessing treatments. CMDUs will be closing down from June 2023, and the process of registering a positive COVID-19 test and waiting to receive a call will also no longer be in place. 

Instead, patients are required to refer themselves to their GP, secondary care team or health board following a COVID-19 positive test. 

From 6th November 2023 onwards, changes are also being made to the process of accessing lateral flow tests for COVID-19. Up until now immunocompromised people could access free lateral flow tests (LFTs) by ordering them via the government website or by calling NHS 119. Now free LFTs can only be picked up by eligible people or their representatives at the pharmacy.   

Following your positive test and making initial contact with your GP, secondary care team or health board regarding treatments for COVID-19, a clinician will assess you for treatment over the phone. You will then either receive treatment to take at home from the pharmacy, or be asked to go to hospital for in-patient treatment. Your doctor will advise which is the most appropriate option for you.  

The doctor or pharmacist might ask you questions about the treatments you are currently taking for your leukaemia, 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 same clinician or doctor. 

Monoclonal antibodies, such as the COVID-19 treatment sotrovimab, 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.

Antiviral drugs act directly on the virus to eliminate it, much like an antibiotic for bacteria. Paxlovid, the antiviral against COVID-19,  is a combination of 2 medicines called nirmatrelvir and ritonavir. Nirmatrelvir stops the coronavirus from growing and spreading. It works by preventing the virus from multiplying and keeping virus levels low in your body.

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 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.