In the last three months people with blood cancer were twelve times more likely to die of COVID than the general population. This is based on the proportion of deaths compared with the fact that only 1 in 270 people have blood cancer. This is much higher than it was earlier in the pandemic.

A year ago during the three months with the highest number of deaths from COVID only 1 in 45 of them had blood cancer, presumably because more of us were able to keep safe by shielding which is now almost impossible as even some health settings are relaxing their protections.

This huge rise in deaths in people with blood cancer is despite the fact that many of us are still shielding, and that in theory we are supposed to be able to access antiviral treatments if we do catch COVID. The shocking fact is that for every sixty three British people who were alive at the beginning of this pandemic and had a diagnosis of blood cancer one of them has sadly died of COVID.

This data comes from the ONS released today and was also explained and commented on by Blood Cancer UK.

I have done a couple of simple calculations based on the published number of the 3,963 people with blood cancer who have died of COVID. There were estimated to be 250,000 with blood cancer in the UK when the pandemic began. That is where the 1 in 63 figure comes from. Previous data is also available in this spreadsheet:

The good news is that preventative treatments such as Evusheld and antiviral treatments when given as soon as possible after infection may be able to prevent as huge proportion of these deaths. Clinical trials suggest this could be as high as 80% or maybe even more, particularly if BOTH were readily available.

The proportion of COVID deaths which take place in people with blood cancer is sky rocketing because vaccines protect most people but they do not work for many of us with blood cancer. The same is the case in other forms of immune compromise including solid organ transplant recipients, but the government data source doesn’t include those rarer conditions.

Of course many people with blood cancer do survive COVID, especially if they are lucky enough to be able to get antivirals. Sue White is a blood cancer patient that has recovered from a recent COVID infection, she said

“After testing positive at the end of March, I’m hugely grateful to have been prescribed the Paxlovid antivirals, particularly as I had finished a year of treatment in February and I know I had no antibodies from four covid vaccines. I still felt pretty unwell but it could’ve been so much worse.”

Read Sue’s COVID story

It is a scandal that the government still hasn’t properly implemented a plan to help reduce the number of avoidable deaths in those of us for whom vaccines do not work. It would not be that hard or that costly, and can be described under four words.

WARN – The risk posed to people with blood cancer and other forms of immune compromise MUST be highlighted to patients, their families, their employers and their friends. Thanks to the complacency of the government and almost everyone in the country we are often mocked as being “nervous” when our fear of dying from COVID is well founded. Why is there not more accurate data being produced and shared widely that explains the risk of serious illness and even death we face?

TEST – Why is it still not possible for many people with blood cancer and other risk conditions to be tested to see what their antibody status is following vaccines? We know this is not completely failsafe, but if you have zero or very few antibodies following your fourth or fifth dose of a COVID vaccine then it is wise to assume that you are NOT protected. Many simply do not know if their vaccine has worked or not. It is worth saying that many who have blood cancer WILL respond to the vaccines, and so testing them would actually be reassuring, although the consensus is that if eligible they should still take antivirals if they catch COVID19 which brings us on to

PROTECT – Evusheld is the ONLY way to offer protection from even getting infected with COVID to those vaccines do not work for, now that masks have been removed even in places vulnerable patients HAVE to access, since improving ventilation doesn’t seem to be a priority. It is simply unfair that we are not being provided this treatment on the same basis as the vaccines. Without Evusheld you are asking us to play a game of Russian roulette as it seems inevitable eventually everyone in the UK will otherwise catch COVID at some point. The level of anxiety that this is causing to those of us who have been shielding as much as we can for two years is hugely significant.

TREAT – It is a scandal of the highest order that it remains very difficult to get antivirals for many who are eligible for them. And that is assuming you are pushing to get them rather than sitting at home not even aware you are at risk. Sources in the NHS have estimated that only 15% of those eligible for antivirals actually manage to get them.

We have been commenting here about the difficulties many face in getting the antivirals. We also started a petition for Evusheld funding which will now get an official response from the Government as it has reached over 11,000 signatures. It is not too late for you to sign this and show your support.

Add your voice to 11,000 others and ask the Government to fund Evusheld for people with blood cancer, other forms of immune compromise, and those who cannot take vaccines.

We are so fortunate to have patient charities working behind the scenes and to inform patients. It was on Blood Cancer UK’s site that I learnt the ONS had updated their data source. Their article is well worth a read:

Gemma Peters, Chief Executive of Blood Cancer UK, said

“This data shows that despite many of them continuing to be careful and trying to avoid social interactions, people with blood cancer are continuing to die of Covid at alarming levels. . . Each of the 404 people with blood cancer who died of Covid between January and March is a tragedy, and it is likely that a number of these deaths could have been prevented if the Government and NHS England had done more to protect them . . .

The badly managed roll-out of vaccines for the immunocompromised stands in stark contrast to the success of the general vaccine roll-out, and we cannot understand why NHS England is not treating this with more urgency . . . The NHS also needs to improve its processes to make sure everyone with blood cancer who gets Covid can access new treatments to give them the best chance of surviving . . . it is unacceptable that we are still hearing about people struggling to access them . . .

We also want the Government to make Evusheld available for some people with blood cancer who haven’t had an antibody response to the vaccines. In 2020, the Government was prepared to buy vaccines before it was clear that they worked – they recognised that it was a risk worth taking, given the potential benefits of the vaccines. Given that there are some people with blood cancer who are still at significant risk, we should be taking the same approach to them.”

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