Thread by @drlennardlee

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.

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…

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.

5/x Of course NHS patients want 1⃣ to get drugs first in the world & 2⃣ 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…

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 @bloodcancer_uk, @kidneycareuk, @mssociety and @AnthonyNolan 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 @UKCORONACANCER efforts,

10x and @ProfBMT, @DrJoDaniels, @mkwillicombe, @AlexRichter3. Clinicians like @SeanHuaLim, @Thushan_deSilva, @EleanorBarnesOx, @cancermedic, @JuliaHCox identified would might get it. gov.uk/government/pub…

11x. They asked the really powerful @APPG_VGP to form a cross party alliance of incredible MPs to ask the DHSC ministers. Heros like @GwynneMP
@libdemdaisy
@RuthCadbury
@wesstreeting
@vickyfoxcroft
@grahamstuart
@BobBlackman
@AndrewDLansley

https://twitter.com/libdemdaisy/status/1567145527044718592?s=20&t=Pbk5M_RBjTQL041jC-WFxg

12x. Really incredible reporters worked so hard to surface the real-live hardships of the #forgotten500k, like @EnnalsEthan @TomChivers
@KatharineDC
@jeremyatmirror
@claremenglish @WiTullis
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_eve @NikolaBrigden @MarkOak04974342 @ShannonB @adantuma @SalWitcher 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…

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 @claremenglish 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-…

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" @CMO_England 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 @timspector 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 @trussliz 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 @theresecoffey. 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…