Ministers continue make excuses on a regular basis that they cannot discuss any negotiations that may or may not be going on with the maker of EVUSHELD. This is a life saving monoclonal antibody treatment that would give people like me a similar level of protection to vaccines. It is simply unfair that vaccines were pre-ordered in bulk, but we the immunocompromised are left exposed, and increasingly unable to live a normal life safe from fear. Here is a typical example of the excuses used in parliament:

We are unable to provide the information requested as this is commercially sensitive. Any public announcement would be made after an agreement is reached with companies.

https://questions-statements.parliament.uk/written-questions/detail/2022-03-17/141958

Unusually the pharmaceutical company have responded to this in a somewhat frustrated tone. They have this medicine available and, with the approvals in place across Europe, if UK doesn’t decide to buy doses soon there will be none available.

Christian Petrovic, the Policy and Communications Lead, Vaccines for Astra Zeneca said:

“AstraZenca does not recognise any limit on discussing the decision-making regarding prophylaxis due to commercial sensitivity.  There is currently an unmet need in the UK in providing immunocompromised people with protection against COVID-19. This is currently not covered within the governments ‘living with covid’ strategy.

We have provided all the requested information to the UK Government to support its decision making. AstraZeneca has not yet been asked to enter negotiations on supply. Whilst some information exchanged is confidential there is no commercial sensitivity which restricts policy discussion regarding prophylaxis.

On the 17th March 2022 the UK medicines regulator, the MHRA, approved the use of Evusheld. AstraZeneca remains committed to ensuring access in the UK as is the case in many countries in Europe and around the world. It is paramount that the most vulnerable people in society are protected against COVID-19.”

(emphasis added)

Meanwhile with every day that passes and we can’t get Evusheld, those who are immunocompromised continue to be put at risk of infection, serious disease, and death. And despite the government removing all COVID safety measures, including testing, the infection rate and hence risk of catching COVID19 is the highest it has ever been.

The ONS data was reported on yesterday in the Guardian

Covid has hit an all-time high across the UK, with almost 5 million people – one in 13 of the population – estimated to have the virus, according to the most recent official data, prompting experts to call for the return of free testing.

https://www.theguardian.com/world/2022/apr/01/covid-infections-at-all-time-high-in-england-ons-data-reveals

We have to wonder how long the ONS will be allowed to keep producing these figures based on their random sampling of the population. We are entering the Trump world of if you do not test then you do not have to report high case numbers..

The Zoe study already had its government funding stopped, but they are somehow continuing their efforts. And reporting a similarly staggering rate of infections as the ONS in this strange world of pretending COVID19 doesn’t exist.

As we know, many of us do not respond to vaccines by producing antibodies and so some of us are as much at risk as if we had never been vaccinated. Some people might say that this is all fine as there are antivirals available for us. Well, there are huge regional differences in how easy it is to get those.

GPs often refuse to refer us to the CMDUs, some of which are not open at the weekend. Some CMDUs are refusing to treat people who’s symptoms they deem “not bad enough” when the whole point is to treat someone who is mildly unwell in the hope it stays that way! Also we are hearing reports of people being denied treatment by some CMDU staff who claim for example that even someone with a b lymphocyte blood cancer can only be given the antivirals if they are under treatment when this is absolutely not the case according to the guidelines. Some of the problems are outlined in an article in the Independent.

One CCG honestly admitted that the vast majority of people in its area who should have been given COVID19 antivirals were not. It did not say how many of these people were hospitalised or died as a result.

“A source from the governing body of the Kent and Medway Clinical Commissioning Group told The Independent that only 15 per cent of eligible patients with Covid in the region received antiviral medication in February.”

https://www.independent.co.uk/news/health/covid-antiviral-nhs-treatment-latest-b2047467.html

Recently a member of Blood Cancer Uncensored leadership team caught COVID19. She had multiple negative lateral flow tests before testing positive on PCR. It is therefore rather worrying that we are being told not to bother with PCR tests any more despite the government sending us priority kits. We can apparently still use them but the guidance no longer recommends us to do so. If you have symptoms but do not test positive on lateral flow, I would definitely recommend sending a PCR test off.

In a recent video clip from the Zoe study, the false negative rate of Lateral flow tests are reported as having about an 80% sensitivity in Omicron. In other words, whilst if you test positive on lateral flow it is almost 100% certain you have COVID19, if you test negative there is a 20% chance of it missing a case. Repeating the lateral flow is one sensible approach but if you have that PCR test at home you should still be able to register it and send it off. Even though the guidance doesn’t recommend us using PCR like that, it seems it is still possible to do so, at least for now.

The Zoe study also updated us on the most common symptoms they are seeing in people with COVID. They are worryingly non specific and so we do need to be looking out for these symptoms. Remember the goal is to treat the disease whilst it is still mild, not giving it any chance to get worse. The symptoms to look out for to make you suspect COVID19 have changed:

Sue was also careful to encourage our readers not to downplay their symptoms when at the CMDU assessment. Some doctors will deny you treatment if your symptoms are felt to be mild or if you say you are starting to feel better. Worryingly many patients, Sue included, begin to feel worse a week or more into the infection. So this whole screening process is somewhat flawed as we cannot predict who will get worse symptoms over time. This is not a time for stoicism and saying “I do not feel too bad”. Stress your anxiety that you will get worse, and highlight whichever symptoms you have and explain how you do not feel right. Some people will recover from COVID just fine without the treatments but you simply cant be sure you will be one of them, especially if you are immunocompromised. Thankfully Sue is doing well now, and since she is just out of active treatment right now, is probably one of the antiviral success stories. We are grateful for that but it makes the lottery some are experiencing with the CMDUs all the more worrisome.

This whole article and its links makes for depressing reading. But it seems our emails are beginning to make an impact and I will share soon a reply I recently got from the NHS which was a bit more humane than previous. We need to keep writing, keep complaining, and keep signing the petition. In case anyone missed it, I am not about to start working for the NHS to try and solve all our problems. That was an April fool joke in rather poor taste. I apologise for all the upset this caused some people. But lets get back to our campaigning mode.

Please share this news with journalists, your MPs, and ask all your friends and family to sign and share our petition which is getting close to the half way point in forcing the government to respond.

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