What is the #forgotten500k and why does it matter to cancer patients?

Dr Lennard Lee- Opinion Editorial (UK COVID/cancer clinical lead)

The UK COVID Cancer programme is one of the longest running pandemic programmes in the UK, with a mission to safeguard cancer patients. Rest assured are still leading on the charge for this.

However, you are probably seeing quite a lot about the #forgotten500k in the newspapers and social media and you might be wondering what it is about and what are we doing about it?

The issue is that UK data programmes, ours included were finding spurious findings. Following vaccination, some cancers patients don’t appear to have developed antibodies following their boosters, their 4th or 5th or 6th vaccine doses. This happened irrespective of whether they had pfizer/AZ/moderna vaccines.

Furthermore, some cancer patients, particularly those with blood cancers and those on chemotherapy seemed to getting COVID at much higher rates than the population. Their rates of hospitalisation and deaths in some patients were 3-4x higher than the population- data.

Dr Michael Tilby then led a major effort with scientists Ms Harriet Taylor, Ms Youssra Al-Hajjia and Tom Starkey to analyse ALL the data from around the world- link. They defined this risk in much better details than any other previuosly study.

We had a eureka moment when we realised that low vaccine effectiveness was being seen in other specialities, all of whom had patients whose immune system wasn’t working- the immunocompromised

Dr Lennard Lee

Together, 500,000 people in the UK are affected, and they can be young and old. They are immunocompromised because they have cancer or blood cancer, organ transplant, autoimmune disease, renal disease or primary immunodeficiencies. They may also be immunocompromised because of the treatments they are on, like chemotherapy, steroids or immunomodulators.

Unfortunately, they don’t respond as well to coronavirus vaccines becuase they are immunocompromised and at higher levels of risk during the pandemic. And this is exacerbated by the return to normal living by the population who widely believe that COVID is mild for everyone.

What defines this group is that we looked at our patients and we find that many are still shielding, still in isolation, still unable to work, see friends or hug loved ones. They are #forgotten500k, unheard and calling on us to notice.

There is a drug that can protect these individuals who don’t respond fully to coronavirus vaccination. It is an antibody therapy called Tixagevimab/Cilgavimab (Evusheld) and it is made by Astrazeneca.

It is given to prevent infection and the original studies showed that it can prevent 8 in 10 infections. It is available in 32 countries, but not in the UK.

The drug works well against current SARS-CoV-2 variants like omicron. The forgotten500k campaign is a coalition of charities, patient groups, MPs and science programmes like us. It asks for consideration of protection for UK immunocompromised patients like those with blood cancer. This could involve new antibody treatments like Evusheld.

Many of us agree that it is a pragmatic decision. Preventative antibody treatments look like they work internationally. We should act, as in future, new variants might lower its effectiveness, similar to coronavirus variants. It should be piloted in the UK too.

Many patients have been in lockdown for over 900 days with terrible mental health toil and want to see family this Christmas. It doesn’t seem a lot to ask for.

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