We know many patients and their families remain concerned about the risk of severe illness should you catch COVID-19. The Leukaemia Care information page has been updated to take into account latest information of what treatments have been recently made available for immunocompromised patients, eligibility criteria and processes to follow to gain access if you are included in eligibility criteria.
You have made us aware that many of you who should have been, were not coded and contacted by NHS and did not receive priority access to home PCR tests for fast track to the anti COVID -19 treatments. Your feedback and experience has helped the charities working together to inform the NHS where there are problems. This has aided identification of issues within the system that are now being corrected by NHS. It is good to hear reports from you that many more of you who should have received priority PCR home test kits have now over the last two days.
While home PCR kits remain the primary way of testing if people have received them. From 10th February lateral flow tests which are then registered on Gov website can also be used as an alternative in the testing route for the immune compromised. Patients can register a positive test and then either wait to be contacted or contact 111/GP for a referral to the CMDU. We know more work still needs to be done to identify those who still have been missed and ensure the processes are working effectively so we will continue to liaise with NHS to address this..
Patient Advocacy
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HAIRBEAR_UK
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Dear Hairbear. This is really useful as I'm quite worried about this. My husband is someone I would have thought eligible - he's diagnosed with CML, treatment is monitoring at the moment. So he's not immuno-suppressed, but he is immuno-compromised, I would have thought. According to his Haematology team, he is not officially considered clinically vulnerable, which I find surprising and worrying, since we understand that vaccines may not 'take' reliably in CML and other leukaemia sufferers. What's more, he's on nightly home perineal nutrition so has a Hickman line, which meant he was considered CEV earlier in the pandemic. The CML diagnosis has come since then.
We've been given the following advice by the Haematology team: "However, if he becomes symptomatic, he may still be able to access antiviral meds or the monoclonal antibodies. There is a community set up for reviewing positive results and will advise accordingly, and you can do this through your GP." So am now trying to do this - initially via e-consult since even phone appointments are difficult to get and email contact isn't encouraged in our GP practice. Do you have any further advice? Good to know Leukaemia Care has this on your radar, as official NHS listings are very hard to access or question. Thanks for all you do.
Hi MeNotDavid Thank you for your message. I can understand how this may be worrying you and confusing.
Although your husband may have been classified in the clinically vulnerable group earlier in the pandemic he may not necessarily be considered so anymore (even with CML diagnosis). This may be because in March 2020 we didn't have the vaccines and therefore everyone, but particularly those with potentially weaker immune systems, was considered vulnerable.
Research has shown that many more CML patients responded well to vaccinations whereas other conditions such as CLL this was not the case.. This has meant that CML patients are now not considered as vulnerable as they were at the start of the pandemic, or indeed as patients with different types of leukaemia.
The advice you have received from your consultant does seem a bit confusing. The consultant should be able to say with confidence whether or not your husband should have access to these treatments.
The criteria states that patients with chronic myeloid leukaemia (CML) in molecular response or first or second line tyrosine kinase inhibitors (TKI) are excluded from the group considered most at risk. I noticed earlier you mentioned your husbands treatment is only monitoring is that regarding his CML treatment? Is your husband on any treatment at all for his CML a TKI for example? cas.mhra.gov.uk/ViewandAckn...
It might be an idea to go back to the consultant and ask them what they meant when they said your husband "may" be eligible because the criteria is not clear if your husband is not on treatment yet? Something else that might be worth you asking the consultant about is antibody tests if they haven't done them already – this might provide reassurance for both you hubby and care team
Dear Hairbear, Thanks for this really helpful reply. In answer to your question, my husband is on acute monitoring for the CML, and his bloods so far have been steady, so I imagine this is the reason for the consultant's response.
What you say about CML patients is also good news - I had been following the research and will be attending the upcoming webinar on the subject.
Meanwhile, I've contacted my GP to see whether my husband would qualify for treatment if he became infected with covid-19, and what is the basis of the 'community response' mentioned in the haematology email about husband's position. I will ask the further questions of the haematology that you suggest, though.
What seems difficult is that haematology only looks at his leukaemia, whereas earlier in the pandemic he was considered vulnerable - BEFORE the CML diagnosis - because of his other underlying condition - he's on nightly IV nutrition because he has short bowel syndrome, so has a Hickman line there all the time, which I think was the source of his CEV status then. He's now just been invited to book for a 4th jab, on the understanding that 'you may have a severely compromised immune system', so on some lists he's still recognised as vulnerable. The problem with the government's advice is that it seems very inconsistent.
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