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title: "A glimmer of hope"
layout: post
image: 
    feature: header_ambulance.png
---
# Affect Theory

To be blunt, the past two and a half years have been terrible for me. Certainly, [they have been worse for others](https://getevusheld.uk/4_patients.html). But I have spent the last two years feeling that basic activities in public pose an existential threat. The isolation of shielding is bad -- but I do have my lovely wife and our little dog, so I am fortunate in that respect. But more worrying and oppressive has been the knowledge that doing simple, basic things -- like getting an ice cream or a coffee or a pint -- could be the death of me. It is this sense that has overshadowed everything in our lives since March 2020.

I will remember, to the end of my life, the fear in the immunology ward in March 2020. All the talk was of a novel virus spreading through the population and from which we could not be protected. One immune-compromised woman spent the entire four hours on the phone to various high-grade mask suppliers, urgently ordering PPE for her and her family. Another phoned her husband telling him that he needed to leave work _now_ and begin isolation. Most people on this ward had previously had stays in ICUs due to less infectious pneumonias. We were no strangers to the danger of infection. But this new virus was something different. Orders of magnitude more lethal. Massively more infectious. A hidden incubation period.

It felt as though the world had changed beneath our feet. And it had. For up to 500,000 people, normal life in the UK remains impossible to this day.

If we get to the 1st December this year, it will be 1,000 days of shielding for us. What does that do to you? "Not good things" is probably the best response. I, certainly, feel a sense of bitterness towards the world. It's not justified or fair, but I see people without masks (just the innocent people without masks, not even the anti-mask brigade) and I feel resentment. Rampant untrammeled viral spread makes the world unsafe for me. People who know me know this. But the guidance from on high -- our supremely principled leadership of the country (sarcasm) -- has decreed that nobody needs to wear masks (and that these are "restrictions", rather than "protections"). And so I don't blame individuals really. But the truth is that I feel jealous and bitter and angry and resentful that we could not keep such minor inconveniences to make the world safer for a group of vulnerable people.

I've started here with how I feel -- so negatively; an "affect theory" -- because perhaps, for the first time in two and a half years, I have, this week, also felt a glimmer of hope.

# Campaigning Catharsis

About 8 weeks ago, I started interacting with a bloke on Twitter called Mark Oakley. I soon discovered that another person, a woman called Nikola Brigden, had setup a Facebook group, in which Mark was involved, called "Evusheld for the UK". After speaking with them, they decided that I was probably "OK" and invited me to act as an administrator of the group. It has, to be blunt, been a rollercoaster since then. I have spent almost every waking minute, outside my job, working on this campaign.

What campaign? The thing that people with my condition need is prophylactic (that is: preventative) therapy. Given in advance, these treatments stop you getting ill in the first place, rather than waiting until you are sick and rolling the dice. There is such a therapy. It's called Evusheld and it's been procured by 32 other countries to protect their vulnerable populations. But not in the UK. It's been authorised since March but the UK government, seemingly on principles of stingy austerity, is almost the only country in the developed world not to provide it. I knew, the second I read about Evusheld, that it was the key to unlocking any kind of worthwhile future life.

We quickly decided that we wanted the campaign group to be more than armchair activism. Anyone can sign an online petition. But it doesn't create any real change.

We encouraged people to write to their MPs and created template letters for them to use. We [assembled the scientific evidence base for the drug](https://getevusheld.uk/4_media.html) and established a website. We created a brand identity for the campaign. We began contacting media outlets.

We also realised that we needed the support of experts and charities. We drafted a letter, signed by 19 national charities, to support the rollout of the drug. Dr Lennard Lee of Oxford University assembled a statement of clinical consensus in favour of the drug, signed by 125 clinicians. We delivered these to the Secretary of State on Thursday. On Friday, NICE, the UK's regulatory body, moved [Evusheld to the next stage of evaluation](https://www.nice.org.uk/guidance/indevelopment?q=id6316). We are now pushing here on the timescale.

I will write something in future on digital activism and what it means. How do you effectively organise in the digital era? But this is really a triumph of political campaigning. Are we there yet? We are not. We still need to make sure this goes through on an accelerated track. But it's a heck of a lot closer. Lots of friends also contributed -- and I was extremely moved by the response of those who wrote to their MPs on my behalf. This meant a huge amount to me.

But more importantly: I now feel a glimmer of hope. The recent [real-world data for how well Evusheld works](https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciac625/6651663?login=false) are incredible. 100% reduction of deaths. 92% reduction of hospitalisation. These are the types of figures that could give me a life back. A future restored. A new hope (too cheesy?). I could visit my newborn nieces. I could see friends without risk. I could feel that I wasn't constantly indebted to work for keeping me safe. I could travel on the train. (I can't tell you how much I miss this basic aspect. I don't drive, so without public transport, I can't do anything by myself. I feel imprisoned and reliant on the goodness of others to transport me.)

Without blowing our own trumpets too much, I feel, also, that what we have done, as a campaigning group of three people who just decided to _do_ something, has been incredible. Of course, we rely on many many more people to help. But the sense of agency and empowerment that it has brought me -- no longer just a victim of circumstance, but someone working to fix it, on his own behalf, but also on behalf of 500k other people -- comes with an enormous sense of wellbeing. We had to adopt a somewhat hierarchical structure (the temptation is just to let Facebook horizontal anarchy reign) but this was necessary achieving an outcome. We could _not_ have done this without the help of the many many other people in the group who dedicated their time, energy, and willpower to the cause. We are also SO grateful to the media outlets who have covered our campaign (Channel 5, ITV, the Daily Mail, the Telegraph). But Nikola, for instance, has been on the phone, pretty much all day every day, phoning media, politicians, Lords, and others. Mark has worked tirelessly to get the media on board and thought through our timescales and strategy in such detail. It's an honour to work with these people and to make a difference.

It feels so close that I can taste it. And, perhaps a year and half later than everyone else, we will also get our "freedom day".