Novavax trial thread number 3

[Frazzled2207]

Yet more chat about novavax, (un)blinding, general vaccine passport stress, approval (please please please) and more.
Those involved in other vaccine trials also welcome.

@Frazzled2207

For Janssen people I noticed there is an update on the NIHR website which is something.

I was on the Janssen trial and this is now licensed. Why doesn’t this show on the NHS app?

The NHS data teams are working on this now. There is no question that it will be pulled through, and we are sorry that we cannot confirm a timescale as yet.

That's worrying. Presumably because J&J has already been approved in other countries whereas Novavax hasn't. But the 'no question' wording seems intentional.

@andadietcoke
Yeah suggests it isn’t just a case of being approved to be on the app. Because it’s not in regular use (yet).
That said Janssen people should be able to prove in a more old fashioned way that they and it and other countries will accept Janssen generally.

I think that as soon as we were accepted onto our trials our GPs should have been informed by the trial administrator. I do wish they would sort this out. They promised we wouldn’t be disadvantaged by taking part, but tbh it looks like that promise shouldn’t have been made in the light of the politics that have emerged around the various vaccines, especially abroad. We shouldn’t be in a position now where we have to consider getting another vaccine.

They probably were informed but the GP has done nothing with the information. In every clinical.trial (not just Covid) they would inform the GP. The ComCov2 people told me my GP had been informed but that at the moment only the GP could put the information on, & they hoped that the trial people would be able to soon. I can't see why the trial sites can't have access to Pinnacle (in England) in the same way normal vaccination sites do. That feeds directly into the GP records.

My GP record just says ‘participant in clinical trial’. It has stayed the same since March.

interesting article from the BMJ website

Stumbled across this almost by accident. Echoes what many of us feel, I think.

Thanks for sharing that @JustMeAndWheatley. Interesting indeed let’s hope this issue gets more visibility soon.

Update (or rather, no update) on NIHR website.

Grr was about the cut and paste the same. Don’t know what to think really. If there was a way through, even if it couldn’t be sorted immediately, why wouldn’t they let us know?

@JosephineDeBeauharnais

I think that as soon as we were accepted onto our trials our GPs should have been informed by the trial administrator. I do wish they would sort this out. They promised we wouldn’t be disadvantaged by taking part, but tbh it looks like that promise shouldn’t have been made in the light of the politics that have emerged around the various vaccines, especially abroad. We shouldn’t be in a position now where we have to consider getting another vaccine.

Agree entirely. If they said “you’d best get another vaccine” I’d be fine with that but the truth is we can’t unless we lie about being on the trial. So maximum limbo. Perhaps they are just looking to string us along until it gets approved and then it resolves itself quickly.

I'm giving them until mid-July. That's the earliest I can get an approved first dose and be done by October.

Disney are accepting cards / certificates as well as the NHS app so I'm hopeful that'll be okay, and if it's not, it's not, the girls can still go.

That BMJ article sums it up entirely. I feel very uncomfortable not knowing whether I will be able to prove my vaccination status if needed, and I keep getting letters from the NHS. If I’d known this would happen I’d have unblinded rather than continued as at least there’d have been a chance of an approved vaccine if I had only had the placebo. I feel very cross that all around me people are planning holidays because we all queued up for the experimental vaccines!

www.gov.uk/government/publications/letter-from-the-deputy-chief-medical-officer-to-uk-vaccine-study-volunteers/open-letter-from-deputy-chief-medical-officer-to-uk-residents-who-have-volunteered-to-take-part-in-covid-19-vaccine-studies

This is encouraging. And makes me feel less anxious.

I was just coming on to post that @WhyIsMyKitchenSoCold

JVT to the rescue!! God I love him. Agree is very encouraging except for the 'by the end of July' part.

I know we are all waiting for the NHS app to show our vaccination status, so the expectation of the letter will be a step to easing the anxiety over the situation. But I do wonder how those, who do not have a smart phone, prove their vaccination status? There is much talk about proof via the app on news discussions, but there must be lots of folk out there who don’t have a smart phone, so surely the app cannot be the only method!
I think it’s time for the gov’t to show consistency and decide that either the app or a certification letter is adequate ‘proof’!

There's an official phone number or website for people to use requesting paper proof if they don't have a smartphone. I'll see if I can find it. But yeah, let us use that if the trial vaccine name or four dates doesn't fit the app boxes.

It wouldn't solve the problem of foreign countries not accepting an unapproved vaccine though.

www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/covid-status-letter/

Here you go ^ or it's just 119 you call.

An open letter from JVT

www.gov.uk/government/publications/letter-from-the-deputy-chief-medical-officer-to-uk-vaccine-study-volunteers/open-letter-from-deputy-chief-medical-officer-to-uk-residents-who-have-volunteered-to-take-part-in-covid-19-vaccine-studies

The cynic in me thinks that it's JVT's name on that letter because, of all the other government experts, he's the one who still retains the trust of the general public - if it came from Whitty or Valance or Nadhim Zahawi, I don't think anyone would believe it. So I'm not convinced and I'm going ahead with my NHS vaccination appointments.

We are sticking with the trial as we have cancelled our plans for the summer so may as well stick with it for now. We have young children so won't be going to clubs or big events. We go to the local theme park a lot so will stick to that.

Will be interesting to see if we do get a letter posted out to us in the next few weeks by the trial.

I have a lot of respect for jvt but I don’t think the letter really gives us any clarity. It has been forwarded by our study team to all of this morning.
It’s been several weeks now and no further forward. Seriously how long does it it take to sort a bit of programming??

@QueenAnnesHat

The cynic in me thinks that it's JVT's name on that letter because, of all the other government experts, he's the one who still retains the trust of the general public - if it came from Whitty or Valance or Nadhim Zahawi, I don't think anyone would believe it. So I'm not convinced and I'm going ahead with my NHS vaccination appointments.

Good for you. No judgement here, I think it’s reasonable that we all make our own decisions here but what will you say when they ask you (as they probably but not definitely will -I’m involved in the programme as a volunteer) if you’re on a trial? I’m a shit liar which is what is holding me back really.

I am half expecting to sit it out to the end and then realise at the end of the trial that I’m almost the only one that did so!!

@Frazzled2207 we will be with you! Husband and I have both said we are determined to stick it out to the end now. I am booked in for the end of November for my final appt.

I’m sticking with it @Frazzled2207