Dr Lennard Lee (Oxford University)@drlennardlee
Sep 23, 2022
25 tweets
1/x 
What happens when a diverse group of patients at risk from COVID-19 try to ask what they need? In this case, #immunocompromised & their small ask for protection from COVID-19 with #evusheld. This is my honest assessment as a UK NHS doctor. 
. Pls RT.
What happens when a diverse group of patients at risk from COVID-19 try to ask what they need? In this case, #immunocompromised & their small ask for protection from COVID-19 with #evusheld. This is my honest assessment as a UK NHS doctor. . Pls RT. 
2/x What's the background? In this case the group affected from COVID-19 are both young + old. They are #immunocompromised. They may have cancer, blood cancer, transplant, autoimmune disease or immunosuppressants. A patient group hasn't linked them before. 
3/x. The pandemic brought them together, because many of them were checking if they had an immune response to coronavirus vaccine, the best form of protection from COVID-19 and they found they had low/absent immune responses. 
. itv.com/news/2022-08-1
. itv.com/news/2022-08-1
4/x At the same time, UK scientists 
were the first to show that this group was at confirmed 
risk vspopulation. And in August 2021, a drug was found by British company, Astrazeneca that could help them- #evusheld & an incredible global roll out started alongside vaccination.
were the first to show that this group was at confirmed risk vspopulation. And in August 2021, a drug was found by British company, Astrazeneca that could help them- #evusheld & an incredible global roll out started alongside vaccination. 
5/x Of course NHS patients want 
to get drugs first in the world & 
drugs are trialled in the UK 1st. Here, a UK product was shipped from Cambridge, but tested & used across the world. Patients only had silence from government & clinical leads. 
astrazeneca.com/media-centre/p
to get drugs first in the world & drugs are trialled in the UK 1st. Here, a UK product was shipped from Cambridge, but tested & used across the world. Patients only had silence from government & clinical leads. astrazeneca.com/media-centre/p 
6/x. Then in March, @MHRAgovuk approved it for use in March 2022, fueling additional hope. But still no news. And then I had the priviledge of watching patient power swing into action + maybe play my small role. Patient power of 500,000 people making their voices heard. 
7/x. As the world returns to normal, they were forgotten. Many are still in shielding with their families who are still desperately trying to stop them getting COVID-19
. They can't work 
. They can't see friends or hug loved ones. 
. dailymail.co.uk/health/article
. They can't work . They can't see friends or hug loved ones. . dailymail.co.uk/health/article
8/x. They connected on Twitter. They connected on Facebook. They connected on whatsapp. An incredible group of people who can't meet physically, with different diseases supporting each other. They faced the same hardships. express.co.uk/life-style/hea
9/x. They then asked incredible charities, like @Blood Cancer UK, @Kidney Care UK, @National MS Society and @Anthony Nolan amongst many others to 
"speak the truth to authority" and see if they can get treatment. And they asked clinical leads, like me, who led on @UK CORONAVIRUS CANCER PROJECT efforts,
"speak the truth to authority" and see if they can get treatment. And they asked clinical leads, like me, who led on @UK CORONAVIRUS CANCER PROJECT efforts,10x and @Antonio Pagliuca, @Dr Jo Daniels, @Michelle Willicombe, @Professor Alex Richter. Clinicians like @Sean Hua Lim 🇺🇦, @Thushan de Silva, @Ellie Barnes 🚵♀️, @Carlo Palmieri, @Julia Hippisley-Cox identified would might get it. gov.uk/government/pub
11x. They asked the really powerful @APPG on Vulnerable Groups to Pandemics to form a cross party alliance of incredible MPs to ask the DHSC ministers. Heros like @Andrew Gwynne MP 🇺🇦
@Daisy Cooper MP 🔶
@Ruth Cadbury MP 💙🇺🇦
@Wes Streeting MP
@Vicky Foxcroft MP 💙
@Graham Stuart MP
@Bob Blackman
@Andrew Lansley CBE
twitter.com/libdemdaisy/st
Daisy Cooper MP 
@libdemdaisy
Sep 06 22
View on Twitter
During the summer recess, Govt tried to sneak out a decision without telling MPs: it said it wouldn’t buy the preventative Covid drug #Evusheld. I’m demanding a public explanation & scrutiny. This drug would change the lives of thousands of immuno-compromised #CEV people
12x. Really incredible reporters worked so hard to surface the real-live hardships of the #forgotten500k, like @Ethan Ennals @Tom Chivers
@BBCKatharineDaCosta
@Jeremy Armstrong
@Clare English @Will Tullis
dailymail.co.uk/health/article
13x. These are ordinary people with a imunocompromised condition, who normally don't make a noise or complain. In this case, they are facing injustice, hardship & can't get access to a drug. They know they will be the last in the world to get it. ft.com/content/fe03bc
14x. They only want early or pilot access for a small number of their most vulnerable members this Winter. They also want to be heard. They wanted our clinical leads to acknowledge the realities of their ongoing forgotten lockdown and difficulties.
multiplesclerosisnewstoday.com/news-posts/202
15x. Thanks to people like @Martin Paul Eve @Nikola Brigden @Mark Oakley @Shannon Peters Banks @Mandy @Dr Sally Witcher they organised & made tools to ask as loudly as they could, from every region of the UK. For acknowledgement & help. express.co.uk/life-style/hea
16/x. There's a website getevusheld.uk. Tens of thousands are connecting & protesting from their rooms. They've been in isolation since 2020, at risk. They're in frequent contact with doctors & their charities and MPs, asking for protection.
inews.co.uk/news/covid-dru
risk. They're in frequent contact with doctors & their charities and MPs, asking for protection.
inews.co.uk/news/covid-dru
17/x. Was what they did good? On balance yes. They've navigated against being #antivax, they've definitely been polite. They haven't used fear excessively. If there's one thing they can do better is that they need to explain the benefits to the "man in the street" more.
18/x. There are benefits for ALL OF US if there is less chance new variants emerging from #immunocompromised patients who can't clear infection. Or if our A&Es are protected from coronavirus admissions in #immunocompromised. Thank for @Clare English for helping emphasis this.
19x. What's been the government response? Still not a great one. They are still excluded from government meetings. And they don't feel listened to. If there's one thing I know about someone who is upset- just listen 
. Hopefully this may improve 
thetimes.co.uk/article/calls-
. Hopefully this may improve thetimes.co.uk/article/calls-
20x. What's the clinical response? 125 doctors agreed with them, across 17 medical specialities and 4 nations. I was honoured to be part and help rally doctors to help make the point. We have aligned with scientists globally on the need to pilot this. getevusheld.uk/assets/downloa
21x. Yes, the clinical community can always do more. Our more "official" @Professor Chris Whitty vs "grassroot" clinical leads are more focussed on pressing "government" matters & less on a highly vulnerable group. We also could have helped sooner- we know that! inews.co.uk/news/health/ev
22/x. I am unsure if a 9month to review data before buying the drug is really required. It IS a long time. I note that @Tim Spector MD (Prof) tells me that the Winter covid surge has started. I think I agree with patients asking for their Winter plan now #evusheld..bbc.co.uk/news/health-62
23/x The Q now is how well democracy works. Whether government will listen to vulnerable patients, & if they can make their asks loud enough whilst shielding. I've never seen a patient campaign like this. Their ask for a UK drug/pilot can't be dismissed. medscape.co.uk/viewarticle/me
24/x It may all fail, and our government will tell them to keep shielding until Winter next year. That seems incredibly harsh. I think they know that @Liz Truss has to save money, but they are asking it isn't "done on the backs of the #Forgotten500k ". washingtonpost.com/business/brita
25/x There's hope with @Thérèse Coffey. That her team might protect the vulnerable & #immunocompromised & find a small amount of resources to help. To address patient accusation that they've been abandoned by policy makers. Fingers crossed. I wish them luck bmj.com/content/378/bm
Dr Lennard Lee (Oxford University)
@drlennardlee
NHS Oncologist. Academic Clinician Lecturer- Oxford/Birmingham University. UK COVID cancer prog. Personal views.
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