I’m going to keep this post really simple. There’s a longer article that explains it in more detail. But I offer here a four step plan that can save our lives.

Some of this we can take responsibility for ourselves over. Other bits it would be nice if our governments, employers and business owners would enact. This article may be helpful fo you to share to explain your concerns. The more awareness we can raise on this matter the better. Please share via social media, email, WhatsApp, or even print it out and hand it to people the old fashioned way.

At the moment some governments are opening up restrictions in the full knowledge that this will mean a huge increase in the background rate of COVID19 infection. The argument goes that vaccinations are going to protect the most vulnerable. It is certainly true that many of those who have been preciously identified as at greater risk ARE protected, with close to 100% of even the elderly with co morbidities making antibodies. But there are many with blood cancer and other forms of immune compromise who will not respond to the vaccine at all, and others who respond but with a much lower level of antibodies produced.

It seems the new strategy is to let COVID19 run wild though our children rather than vaccinate them and also let all the antivaxers catch it. Some might see this as an example of the survival of the fittest. Although nobody dares say it presumably the hope is that the end result of this will be herd immunity from a combination of immunisations and natural immunity. If this occurs then the disease can no longer spread in our population. This may happen fairly rapidly here in the UK given how many people have been vaccinated. IF that happens and IF we do not have any variants that can fully escape the vaccine then this pandemic will pass at least in countries that have managed to vaccinate high numbers of people. There is some reason to hope that it may not be possible for the virus to mutate enough to escape the vaccine because to do so might mean that the spike protein would no longer bind to the ACE2 receptor it needs to bind in order to get into the cell.

If herd immunity is achieved it would ultimately be good for patients with blood cancer as finally we will feel safe. But in the meantime those who are immune compromised are going to be at huge risk, possibly the greatest risk so far. If the harsh truth is that we will each eventually catch COVID19 then I’m fearful that large numbers of us are going to end up in hospital or worse. And of course there are going to be many people who will end up with long COVID. Health services may also find it difficult to provide non COVID19 care.

What can be done?

1. WARN all blood cancer patients that some of us won’t respond at all to vaccines

Despite misleading overly positive messaging we already know that many with blood cancer will not respond to the vaccine at all. Blood Cancer UK has a page summarising what we know so far.

2. TEST ALL of us for antibodies to see if we have responded or not

I have written previously about how and why to go about this. It does not really matter what percentage of people with your blood cancer type or at your stage of treatment respond to the vaccine. What matters is how have YOU responded. Some people will make the excuse that we don’t know exactly what level of antibodies are needed for protection. But clearly if we have no antibodies we are at much higher risk. And it seems quite obvious that the more antibodies we make, the lower our risk. There is good data from the labs that this is particularly true for the new variants where higher levels of antibodies are needed to neutralise them.

Some doctors are already advocating 3rd booster doses of the COVID vaccine for blood cancer patients. All of us in the UK will be offered this from September. It seems likely that this will be of most benefit to those who had at least some response to the first two doses.

3. Protect us from transmission risks

Removing mask mandates snd social distancing in the workplace and other places we might want to access will restrict our ability to safely go about our business. Some environments will continue to require masks, including the NHS, Uber, and some supermarkets.

This will make a real positive difference to people with blood cancer as they go to medical appointments 👏👏👏 https://t.co/dwnDnWKv50

— Blood Cancer UK (@bloodcancer_uk) July 15, 2021

But compliance is already poor despite mask wearing currently being a legal requirement. Some of us will feel we really have little option than to stay home apart from outdoor meet ups. Yes the really good masks (also called N99) must help. But if only us are wearing them and not everyone then we are not as safe. Working from home is clearly safer for us until herd immunity is reached. Ventilation is also crucial.

A story from my brother: 20 of his friends booked a room in a pub for the Euros semi-finals. Out of the 20, 16 caught Covid. The 4 that didn’t were sitting next to the only open window. Ventilate!

— Emily Bazalgette (@EmRoseBaz) July 16, 2021

In the UK we have now decided to offer COVID19 vaccines to children over 12 who live with the immune compromised including blood cancer patients.

4. Treat us to reduce the severity of COVID19 infections

How can it be possible that over a year after the USA made the Regeneron monoclonal antibodies available this is not available elsewhere to all of us who haven’t made antibodies to the vaccine if we catch COVID ? In the USA monoclonal antibodies are in theory available for anyone with a blood cancer who catches COVID19, particularly if they haven’t made sufficient antibodies to the vaccine. Why not discuss this NOW with your doctor to understand how you would get them if you are infected. There is also a national helpline and website that explains more.

Currently outside the USA the Regeneron antibodies are not even available on a compassionate use basis. I had previously heard of at least one UK patient who did get access. Convaslesent plasma has also been shown to be effective for those who do not have their own antibodies. There are a number of treatments including oral or inhaled steroids among others that have been shown to be effective. Talk to your doctor early if you catch COVID19 about what may be appropriate and have a low threshold to get assessed at a hospital to see what treatments you might qualify for.

In the USA it is now possible to get monoclonal antibodies after exposure to COVID19 even before you test positive or if you are at high risk of exposure.

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