Evusheld and private versus public healthcare in the UK

Really shocked at the cost of someone else receiving Evusheld privately in the UK, a preventative medicine against Covid to help immunosuppressed patients, many of whom do not generate any antibodies from vaccines. Unlike other countries the UK is not providing this publicly.

A single treatment of Evusheld lasts 6 months. It would cost up to £800 to the NHS but it’s not approved unlike so many other countries. It’s newly approved privately in the UK, and we’d been told £1000. Well someone I know has just got it. And it’s way way more than that.

£500 for consultation with a private doctor, £1600 for the drug, £160 administration. So about £2400, out of someone’s private coffers and that’s I think for just 6 months protection. This drug could save thousands of extremely vulnerable lives. Normal people can’t afford this.

I’m extremely lucky I’m getting some good antibodies, after 6 Covid vaccines (yes 6!). Though Covid vaccines trigger a devastating 3-month long neurological flare for me every single time. But Evusheld would make me feel safer, and protect others far more. Provide it on the NHS now!

Evusheld could be provided on the NHS to patients at considerably less cost per dose than private providers are selling it to patients directly. Yes it has a cost but for 500K people who are not being protected enough by vaccines and still at phenomenal risk it is needed now.

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5th Covid vaccine coming up

I’ve my 5th Covid vaccine coming up this week. 5th vaccine because I am eligible for the Spring Booster because I am severely immunosuppressed. Previously I had the usual first two Covid vaccines, then a special bonus 3rd primary because I’m severely immunosuppressed, then my first booster just after Christmas.

It is very likely – well almost certain – I will flare neurologically again after Covid vaccine #5. I have after the previous four Covid vaccines. If so that will probably wipe me out almost totally for another three months, starting about a week after my vaccine this week.

So this is probably my last week of a bit of respite – a bit because I am often waking up late afternoon even in this brief respite phase since the start of April after my symptoms finally eased after my 4th Covid vaccine in December.

I may seem bonkers putting myself through this repeatedly with the vaccines. But they could save my life. My medics and I are agreed that I should keep getting vaccinated. My neurological flares I can recover from, even if it takes three months each time. It is also very likely I will get a 6th Covid vaccine in the autumn …

In no way is this an anti vaccination post. Vaccines save lives, and especially people like me who are severely immunosuppressed. I had a very poor vaccine response to the first two vaccines, but my bonus 3rd one (a special pre booster one needed because I’m severely immunosuppressed) gave me a healthy dose of antibodies, which could save my life. My first booster then extended that protection. Many severely immunosuppressed people have not had such a good response, despite loads of vaccines.

But the Covid vaccines take a terrible toll on me, because my auto immune neurological disease cerebral vasculitis is in my case so unstable. Each time I have a Covid vaccine I have three months of dramatically increased bladder incontinence, crippling headaches, sleeping up to 18 hours a day and phenomenal sedation even when awake, and appalling arm and leg control. It is amazing that I am not raging about this more. In my old consultant’s words I’m just too “phlegmatic”, which I eventually realised was a bit of a compliment!

I can access antiviral treatment if I catch Covid. I can also still access free testing to help me get treatment in time. What would really help though is to have the Evusheld preventative antibody treatment, which is designed to prevent severely immunosuppressed people like me catching Covid in the first place. But the UK government hasn’t bought any Evusheld yet, unlike just about every other comparable country.

Just don’t anyone say to me we are living with Covid, or even worse Covid is over, as a dental hygienist said to me the other week. I am getting through the pandemic, but at a terrible cost in terms of how the vaccines affect me. No way is it over for me, and many other people like me.

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Living with Covid

Much of the current political discourse, especially in England, is about how Covid isn’t a problem any more, something we can live with. This is accompanied by removal of testing, so people will have Covid but not know. Likewise mask wearing isn’t being enforced, and many people stopped long ago. Note wearing a mask primarily protects others, not you, including the clinically extremely vulnerable you aren’t aware of just by looking at them. And this is all supposedly ok.

I’m one of those at greatest risk from Covid, being severely immunosuppressed for life, due to treatment controlling my incurable neurological disease and keeping me alive. I have been told very clearly by my medics that Covid could kill me and I must avoid catching it.

The first two Covid vaccines left me with very little protection against the vaccine. I am very lucky to have finally after my 3rd primary vaccine (an extra bonus vaccine given to the severely immunosuppressed in the UK) developed a good number of antibodies. But Covid could still potentially kill me, and I still need to avoid it.

I have been stuck in the house for two years, partly due to the risks out there, partly as my neurological disease rages. Both during the official shielding periods when I was advised by the NHS to shield, and after. The inequalities of so-called “living with Covid” are immense. It isn’t safe for me to go into a dining environment or coffee shop, or a general shop, or anywhere where people may be unmasked. Nor can I easily meet family or friends.

Yet even vaccines that may save my life have a high price. My unstable life threatening neurological disease has flared after all four past Covid vaccines. It takes me three months each time to recover. I have just about recovered from the December jab 4. I have jab 5 (Spring Booster) due any time now, which will almost certainly cause me to flare for another three months. But my medics and I are all agreed I need these vaccines.

It is no wonder I am so bitter at politicians and some of the public blithely dismissing Covid as a threat. If you haven’t lived in the shoes of someone extremely vulnerable, especially severely immunosuppressed, you can’t grasp what we’re facing, and why the risks are so high for us, especially now. In the last few weeks I have known many friends and clinically extremely vulnerable catch Covid. One friend with zero antibodies from four vaccines is fighting it now. The dangers to us are huge, but according to many politicians and the public it is just fine.

This post was prompted by a blog post from fellow academic Martin Paul Eve. He has even lower protection from the vaccines than me, and describes the situation he finds himself in eloquently.

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Attending the Edinburgh Book Festival online rather than in person

This year I’ve been an online attendee of the Edinburgh Book Festival. I thought it might be helpful to blog some thoughts about this, and in particular how it compared for me to being there in person in the past.

I’ve been going to the Edinburgh Book Festival many times since the late 1990s. In the early visits I would travel down by train. More recently, as my neurological disease progressed, my husband and I had to switch to driving down with my wheelchair and staying a couple of nights in a hotel. Much more costly and time consuming, but giving me much valued experiences and memories.

This year the festival is being held in a new venue, and is offering a hybrid in-person/online attendance option. It would not have been safe for me to go there in person this time, being immunosuppressed during a Covid pandemic. The vaccine has fortunately given me antibodies – yay! – but at an extremely low level. So I am still at great risk, and being ultra cautious. But the availability of online tickets for most of the book festival’s events this year allowed me to attend in a different way.

The highlight of the festival for me has always been the author talks. I’ve written here before about attending some of these in person, e.g. in 2013, 2015 and 2018. Usually because I have to travel from a distance I can only see one or at the very most two author talks, depending on the timing options, and what I can get tickets for. But online attendance allows me to potentially attend more events more events spread over more days, even at a distance.

This year I bought online tickets for three events: Helena Attlee talking about the tale of a violin through time (I am a long lapsed violin player), James Robertson talking about his new ghostly novel set in the Angus glens (I live in Angus), and Denise Mina talking about her new novella retelling of the Rizzio murder. I watched the first and third of these live, and the second on catchup in the middle of a neurologically disturbed night. All were watched from bed in my pyjamas, on my iPad with Bluetooth headphones. Definitely a form of access I haven’t enjoyed attending the festival before!

With each event I was able to watch video footage of the author talks, with good camera shots of the authors, interviewers and audience in the room (a very spaced out and masked up audience). The audio was clear, and the experience of watching reassuringly close to being there in person.

In addition to the live video stream online attendees have access to online text chat rooms, where we can share comments, and ask questions to be posed to the speakers. I didn’t ask a question myself, but participated actively in the chats. I was pleased to see the online questions asked by the interviewers on behalf of the online audience members. This was integrated well alongside questions from the audience in the room in Edinburgh.

So yes, positive impressions from watching author talks online. On the downside online participants do miss out on face to face signing events, though some of the author talks had prebookable (days in advance) online signing options. I was more concerned though at how online members could miss out on the festival bookshop. Visiting the festival bookshops – adult and children’s – was always a major highlight for me of attending in person. With a huge range of books on offer, including from publishers I would never normally encounter, I would always come away with unexpected gems.

Yet the bookshop is not promoted effectively in the festival website. Yes on individual events pages there is a link to order book(s) associated with the event. And clicking on that takes you to the bookshop website. But otherwise the online bookshop is not linked as far as I can see from the festival website. Even if you know it exists it can be very hard to find. Google is often the best option! Which is ridiculous. Because when you get there it is possible to browse the shelves well, and find gems. Ok not the same as physically in person, but worth some minutes of your time for many online attendees.

So yes some downsides, but overall I’m really happy I could attend in person. Very grateful in fact. Looking ahead it may be safer for me to attend in future years, but my neurological disease is progressing, and that might simply not be practical. But I’m encouraged that the festival organisers have said that they value the online attendance, and intend to continue to make it part of the festivals in future years. So hopefully I can attend in that way in future years. And maybe the bookshop be better linked too?

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