Last Wednesday, the British government announced plans to drop all remaining COVID-19 restrictions in England by the end of the month, including the legal requirement for infected people to self-isolate. Doing this, they said, would make England the “freest country in Europe”. But millions of us who are immunosuppressed are not free.
For the past six months, I have been living alone, separated from my family. I have an autoimmune condition called lupus and because of my illness and the immunosuppressing medication I’m on, I am extremely vulnerable to COVID. With infection rates continuing to soar, I am isolating in a rented flat across the street from our home, so my teenage daughter can attend school. This is an option we’re lucky enough to be able to afford, and not one all people like me have available.
At the start of the pandemic, the government created a programme called “shielding” to safeguard those of us it deemed at highest risk of severe illness or death. As part of this programme we were asked to take additional measures to protect ourselves and the National Health Service (NHS). For months, I received daily text messages reminding me of both my vulnerability and my societal obligations. The texts told me to never leave my home. To always keep three steps between myself and others. To keep a hospital bag ready.
The language was frightening, but in retrospect, largely appropriate. At the time, the medical community was only guessing who would struggle with COVID, but now we actually know. Recent research by the University of Birmingham found that during the first three waves of the pandemic in the UK, 45 percent of those with suppressed immune systems who contracted COVID had to be hospitalised, and 27 percent of those who had secondary immunodeficiency like me tragically died. In those early days, weeks, and even months of the pandemic, I felt afraid but also cared for, guarded.
As “shielders” we had unwittingly entered into a social contract where we agreed to stay home and shelter in place, to stay out of the hospital and leave beds and ventilators to people more likely to survive. In return, it was implied that we would be “shielded” – protected from harm. As someone severely immunocompromised, I had no illusions there would be a quick fix. I entered into this contract fully expecting months and possibly even years of commitment. I prepared for a time when I would say no to social engagements that others could attend. I expected to wear masks long term to protect myself from disease. I put my heavily stamped passport in a drawer, guessing correctly that it would be years before I would board another plane. I knew I was starting a journey that would be long, lonely and onerous – if I survived it at all.
The months passed, and we all pinned our hopes on vaccines. I counted the days to my prioritised appointment. But when the day came, my lupus turned against me. I developed post-vaccine heart issues and ended up in hospital, but did not develop antibodies against COVID-19. When I thankfully made it back home, I knuckled down and carried on isolating. I understood that I needed to continue being extra careful to keep myself safe and away from the disease until alternative treatments were developed.
That was one year ago. Throughout 2021, when most people in the UK regained some freedom, I have gone months and months without human touch. I saw my daughter prepare for her first homecoming dance only in photographs, emailed to me by another parent. I used FaceTime to say goodnight to my husband, night after night after night. I attended my mother’s 80th birthday party over Zoom, watching my siblings eat cake with her in the garden. I had to decline work, miss dinner parties, and attend funerals online. I have lost memories with friends, precious time with my spouse and hundreds of moments with my little girl, who is edging her way towards adulthood. Nothing about shielding was easy but I stayed resolute, holding on to the belief that the government would continue to support people like me, that it wouldn’t just leave us behind.
I really did not anticipate I would ever be in the situation I am now, where the government has decided it’s time to turn the page, start a new chapter – a chapter where everyone, including people like me, would have to “learn to live with COVID”. I never once believed that 700 days into this journey, my shield would be fully ripped away, and I would be forced into a society that no longer cares about my survival at all. But here we are.
Today, there are more than one million people in this country who are still extremely vulnerable to COVID. Many of us have been vaccinated, but the vaccines don’t always offer us the same protection they give others. This illness, which is now supposedly “milder”, is still killing nearly 2,000 people every week in the UK – and that number includes many immunocompromised people like me.
Right now, the only “protection” offered to us by our government comes post-infection: we are being told that if we contract COVID-19, we can access antivirals or monoclonal antibodies to increase our chances of survival. But these post-infection protections do not offer any guarantees against long COVID or other serious complications that can severely limit our quality of life or even lead to death. When you combine this lack of preventive treatments with the plan to drop all restrictions, we feel like we are left with no choice but to retreat deeper into our caves. But there is another path our government can follow.
Several other countries are already offering preventive antibody treatments like AstraZeneca’s Evusheld to people with compromised immune systems who can not get a sufficient antibody boost from vaccines. We need the same here in the UK. We need our government to test, approve and make widely available effective treatments that can help those with suppressed immune systems to gain long-term protection prior to infection.
Of course, no solution is easy – we know that these treatments will need to be constantly tested for effectiveness against new variants and updated as necessary, but this is hardly a big ask. We are capable of swiftly updating our vaccines as viruses evolve, there is no reason we can’t do the same with preventative antibody treatments. As a vulnerable population, we have lived up to our side of the bargain. Now those in positions of power need to live up to theirs. We cannot continue “shielding” and living in fear indefinitely. We need a vaccine equivalent that can protect us proactively – and we need it now. That is the only way we can safely rejoin society, and finally go back to living our lives.
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