Imagine you have planned a trip but when you arrive at the airport, they tell you that the plane is going to crash. They can reliably tell you that 40% of people on board will be hospitalised and 27% will die as a result. Would you knowingly get on that plane?
What if the plane was the only way for you to get back home? How long would you wait, completely alone, before you take the chance? Days? Months? Years?
Peer-reviewed and large-scale research from the University of Birmingham says these are the odds with covid for people like me, who are immunosuppressed and have secondary immune deficiency. I am in the one percent of the UK population who received zero antibodies from the vaccine and also have not yet contracted covid. But like many in that group, I’ve stayed well and possibly alive only through a very restricted existence.
For the last two years, two months and four days I have been shielding. And for nine long months of that I have been living alone in a flat, separate from my family, so that my teenage daughter can go to school and have a reasonably normal life.
If you are reading this and thinking you wouldn’t have made this decision, I completely understand. Sometimes I wish I hadn’t either. The choices we have had to make aren’t easy ones. Nonetheless, they are made based on well researched and thoroughly considered facts, and those facts are grim:
- I am high risk for severe illness and death from covid because I have lupus and am on immunosuppressing medication.
- I had the first vaccine but when I was tested afterwards it showed I had zero antibodies
- I had a severe lupus flare from that vaccine that resulted in heart issues, hospitalisation and nine months of illness so I cannot have any further vaccination. It’s questionable where I’d mount an antibody response anyway as I have no B cells.
- With these heart issues I was put on medication called Flecainide that I am now on permanently. Flecainide is contraindicated with Paxlovid, the leading anti-viral given to reduce disease severity post-covid infection. Therefore I cannot have Paxlovid.
- The second choice anti-viral in the UK given to those who can’t have Paxlovid is sotrovimab. This drug has been withdrawn from use in the US because research shows it’s not effective anymore against BA.2. We are still using it here. Given BA.2 accounts for over 95 percent of cases in the UK, if I got infected, I’d likely be treated with an anti-viral that would not do anything.
- While people see Omicron as milder it’s really that the immunity people have (if they have it) that is creating a milder response. So for the unvaccinated–and the unprotected like me –the risk is the same as at the start of the pandemic, but we are living with unfettered circulation of disease.
- The pre-exposure treatment Evusheld, which is in use in many countries and would have given me some protection over the past six months, has been licensed in the UK but not purchased.
Faced with this data, I have spent the last six months exploring whether I could get treatment elsewhere (hitting countless dead ends) while heavily lobbying the UK government to do the right thing for the 500,000 of us stuck in this Groundhog Day of shielding. I moved to the flat in the hopes rates would decline and I could more safely circulate in society, but we have never once in the past year dropped lower than the rate we had when I moved here. Our other hope was holding out for treatments. But now there is a new fact: Evusheld’s efficacy against the upcoming variants BA4/5 is waning.
So we are at a new decision point. And with this new data I’m planning to head back to the metaphorical airport to try to get home because there are no other options left. But I can’t help but feeling I have a suicide bomb strapped to my chest.