Scottish vaccine trial volunteers need your help

[Torvean]

I've posted this in other areas but I'm posting it here as its a Scottish issue and I hope some people will support it.

Hundreds of people in Glasgow and Aberdeen signed up for vaccine trials in October 2020.

As part of The trial we have had 4 injections ( 2 vaccinations , 2 placebo), multiple blood tests, medical exams, ultrasounds and Covid testing.

Unlike in America we did this for free.

As of Sep 1st we are still registered as unvaccinated. This is putting us at a big disadvantage.

The Scottish government have refused to help resolve this.

For anyone that has had a vaccine, a volunteer helped make this possible. We really need your support now. Please help by signing. We would be extremely grateful.

To emphasise my point the SNP plan to bring it vaccine passports this month for anyone attending large venues.
No vaccine candidate can attend anything as it stands. How would you feel if you were treated this way after volunteering to get vaccines available.

www.bbc.co.uk/news/uk-scotland-58412832

I would sign, is there a link to the petition?

Oops thank you @rookiemere.

www.change.org/p/scottish-government-help-vaccine-trial-participants?recruiter=1207874888&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_petition&utm_term=ceac93adfb2940b895a4c50d2262675e&recruited_by_id=afc71e80-c1d1-11eb-8ab5-cd013ae4f00c&utm_content=fht-30534625-en-gb%3A0

Signed

Sorry if I am reading it wrong. So you actually had the vaccine? What is the reason for them not recognising you are vaccinated?

Was it a different vaccine? Or is this just admin red tape because you never got recorded at a vaccine centre?

Hi @Blanketpolicy. So we went to a clinic as part of the study that I'm still in.
I've had 2 doses of the vaccine. The vaccine is currently applying for EUA. However we don't need that to happen before we can be registered as vaccinated.

The data from the clinic is with the Scottish recording agency who are entering people onto the website.

The delay is due to the govt not allowing a code to have us added.

My local MP has been trying to help. However I got a reply from a Scottish MSP covering Covid issues. And in her reply she basically said we are not at a disadvantage.

This just isn't true.
With Covid passports which will come in . And the fact healthcare workers will still have to isolate even though they've had 2 doses of a vaccine.

The pharmaceutical company have also been poor. They refuse to update us , and don't reply to any emails.

When I joined the study in October 2020 they were planning to get authorisation in March 2021.

We've been pushing for vaccination status since June. The English participants have been added to their app and they have a letter from their govt giving authorisation of entry.
They offered to send that letter to all participants, however NS said she wanted to do her own. Those letters have never been sent.

We are going round in circles. That's why I hope a petition might get their attention.

I hope I've explained things, in a rambling fashion.

If anyone has Qs I'm happy to try and answer.

Signed. Maybe try Alex Cole-Hamilton as he's got a campaign going against vaccine passports.

That's terrible. I have signed.

That is awful... I'd assumed it was something to do with the vaccine not being one of the registered ones, which is unfair enough - but it sounds like it's "just" an admin cockup. Which is even worse. And saying you're not at a disadvantage is full scale bollocks - I'm assuming that MSP was totally unaware of her own parties' vaccine certificate policy .

I've signed it.

Just a question on the process - what is the reasoning behind being given 2 vaccine jabs and 2 placebo jabs? Is it something to do with working out optimal timing between doses or something? I thought you got either a vaccine or a placebo (but didn't know which) to work out how effective the vaccine was compared to people who didn't have it. (In which case, I could understand that some trial participants actually weren't vaccinated initially - though that seemed to be resolved early on in the vaccine programme by giving the placebo volunteers the vaccine too).

Not sure if this is reassuring, and i do wish you every success, but when I went to a large venue in England they accepted a negative lft instead of the NHS passport.
In other cases eg going to France, the French embassy can generate a qr code for you.

Not to dismiss your struggles at all, but there might be some ways round some issues.

@ResilienceWanker

That is awful... I'd assumed it was something to do with the vaccine not being one of the registered ones, which is unfair enough - but it sounds like it's "just" an admin cockup. Which is even worse. And saying you're not at a disadvantage is full scale bollocks - I'm assuming that MSP was totally unaware of her own parties' vaccine certificate policy .

I've signed it.

Just a question on the process - what is the reasoning behind being given 2 vaccine jabs and 2 placebo jabs? Is it something to do with working out optimal timing between doses or something? I thought you got either a vaccine or a placebo (but didn't know which) to work out how effective the vaccine was compared to people who didn't have it. (In which case, I could understand that some trial participants actually weren't vaccinated initially - though that seemed to be resolved early on in the vaccine programme by giving the placebo volunteers the vaccine too).

Hi. So originally the study was 50/50 and we did not know which we got. In April they added a crossover study so you again got 2 injections not knowing again what we got.

So we are fully vaccinated.

You don't need the vaccine to have EUAs to be added to the register.
All English participants are on their app.

I have had confirmation today that the Scottish govt are obstructing our entry to the database.

I'd ask anyone who has had an NHS vaccine to please support the people that made it possible.

Thank you to those who already have.

Thanks (for the answer to my Q, and also for volunteering in the first place ).

I've signed the petition. I was on the trial then unblinded to get the NHS vaccines, however I have a final appointment in November for a blood test. I will definitely be mentioning this appalling problem to whichever unlucky nurse takes the sample it could be a few as I'm officially difficult to get blood from --

At the beginning the only Q I had was about what would happen in the event of a vaccine becoming available before the end of the trial and the doctor had no definitive answer, which I thought was quite poor really. I went ahead because I didn't think vaccines would be available on the NHS as soon as they were.

I got my first one in early March (which was actually a mistake as I'm still incorrectly 'coded' as immunosuppressed,) presumably from when I had cancer ten years ago, and fortunately I didn't hear about the crossover trial before my nhs appointment.

Ironically, towards the end of my cancer treatment I asked if a flu jab would be advised. Nobody seemed to know and nobody got back to me about it, but the following years I was offered the flu jab on the NHS. After a few years of not taking it I asked them to take my name off the list and I haven't had an invitation to get it since. I didn't know I was still 'coded' as immunosuppressed until a few weeks ago when the NHS sent a letter to say anyone in my household over the age of 12 would now be eligible for a Covid vaccination as I was coded as immunosuppressed. If this was no longer the case please tell them to update their records. Well, I'm not going to tell them yet because if boosters are recommended at a specific interval after the first 2 doses I don't want to have a longer interval because of being on a different priority list.

However, it struck me that the trial doctors must have not seen that I'm classed as immunosuppressed. Obviously it doesn't matter in my case but could there be volunteers who don't know they're classed as immunosuppressed? RA sufferers, people with Crohns on steroids etc?

Anyway it's appalling that the vaccination status of trial volunteers still hasn't been sorted out after all this time. And fwiw it annoys me that volunteers are hardly ever mentioned in the media. The celebration of that lady who got the first one on the NhS and her lack of acknowledgment of the volunteers was irritating. You'd think she'd done something heroic.

Hi@mibbelucieachwell.
I was told when the trial started that if an NHS one became available that you could request to be unblinded then make a decision on NHS one.

I I'm not fond of Novavax or the Govt due to this trial.
So the November appt was going to be a blood test, questionnaires and a booster for those vaccinated in October.( not those in April), but now they won't give ananswer about the booster.

To see NS at PM Qs this week freed early from self isolation made me furious. She was Q by a LibDem who is still I'm the trial. She gave her standard answer "you are not disadvantaged". Completely untrue.

No Covid passport/QR code/ no early end of isolation/ paying for PCR tests if you want to travel.

Sadly it's difficult to get any support if you seem to be talking negatively about the SNP.
My altruism has long gone.

Absolutely appalling.

I hope this is finally sorted ASAP.

It's shocking. People volunteered in good faith.
This MSP seems to have taken it up in parliament

https://twitter.com/dlumsden/status/1433422840422813698?s=21

How ridiculous! And NS just drops further and further down in my estimations.
I understand you need to resolve this issue within Scotland for yourself and all Scottish participants. However, if England has a code they can add so you can be recognised as vaccinated, would it be possible to take your vaccine card/trial paperwork across the border and see if a GP or health centre can generate a certificate?

I think it's awful. I've also signed and shared.

I live in central Scotland and feel that NS has also gone way down in my estimations.

Our numbers are going through the roof because people in households with positives are testing far too early and then being free to go about their business due to the vaccination status. Only to come down with symptoms 3/4 days later 🤦🏼‍♀️

Sorry I'm back begging for help. The Scottish govt, NS , health minister, public health refuse to communicate with us. The press are in the SNPs back pocket.
They won't answer why we can't be on the register. We are not entitled to Covid passports, and we can't end self isolisation early.

I got advice from Kate Bingham, head vaccine taskforce (who was knighted this year) to name them on twitter.

The tag are @scotgov @scotparl @PHSOfficial
#nhsvaccineprivilege

Any help would be great.

My husband volunteered for the novovax trial. He got a letter from the NHS to prove that he is vaccinated. Unfortunately it seems that this isn't accepted by many countries.

He knows of several people who have just gone and got a second lot of vaccinations from the NHS and is considering doing the same.

@Torvean

Sorry I'm back begging for help. The Scottish govt, NS , health minister, public health refuse to communicate with us. The press are in the SNPs back pocket. They won't answer why we can't be on the register. We are not entitled to Covid passports, and we can't end self isolisation early.

I got advice from Kate Bingham, head vaccine taskforce (who was knighted this year) to name them on twitter.

The tag are @scotgov @scotparl @PHSOfficial
#nhsvaccineprivilege

Any help would be great.

Did you get the same vaccine as the rest of the population? Apologies, I've not read the full thread. Surely the company you did it through needs to send the participants details onto the people who record who has had it?

Hi @StarryEyeSurprise. Our trial was a double blind trial . So everyone is doubly vaccinated.
Our data has been with the registry since April. I've spoken to the registry and have been told they can't update it and add us, due to the govt not allowing it.
Yet the English volunteers in the same trial are all on the same app.

We were promised entry by 6th August still not happened.
It is the govt doing this. No other country has done this.

I did not get a vaccine the same as most of the UK . Hoeever s drug does not need an EUA for us to be registered, they're 2 separate issues.I got one that is an excellent vaccine. However the pharmaceutical company are unorganised and kept doing trials instead of filing data.

We've been told the vaccine would be resleased in January , then March, then June and now the 3/4 will there's no word of that. The vaccine company won't reply to any correspondence from UK volunteers which is awful considering we did not even get water. Those in the US get £1800 plus £30 for every phone call.

Covid passports will start this month. The vote is for show

Whats most insulting is NS thanking us and she's so grateful etc etc. Yet she treats us like this. She's stated publicly that we are not disadvantaged.
It's not true, with an NHS vaccine youcget a Covid passport, and you can end isolation early. Both things I'm not allowed. So NS has no right to say "we are not disadvantaged, vaccine volunteers get to decide that.

Watch this ftom FM question time last week at 18 minutes. She basically dismisses the LibDem member whose in tbe same trial.
Start at minute 18

I caved and spoke to a journalist yesterday. It saddened me to do it. I could have talked to the guardian 3 months ago but the situation was different.
I didn't volunteer to fight with the govt and a pharmaceutical.
When we signed up for trisls ppl were really supportive snd encouraging.
Now they've had NHS vaccines noone cares about us.
And the Svottish press are a nightmare. They won't write about something affecting vaccine volunteers. But yesterday the feature 1 dead bird, 1 broken down car snd 1 woman vomplsining about potholes.
They're too scared to publish the truth about NS and her SNP govt.

Apologies for the long thread.

I'm sorry you're going through this when you've been brave enough to go through a trial. It's a ridiculous situation and I hope you get a break through soon.

I really hope you get somewhere quickly

@Rainbowshit

My husband volunteered for the novovax trial. He got a letter from the NHS to prove that he is vaccinated. Unfortunately it seems that this isn't accepted by many countries.

He knows of several people who have just gone and got a second lot of vaccinations from the NHS and is considering doing the same.

Are you in England? So am I and I have exited the trial and got new vaccinations now. However it’s not that straightforward because in most cases useless novavax data has been updated to the app meaning we can’t get a vaccine by normal means. Or if they have the app now shows the first and last vaccine received which is not much good. A complete shit show.

On a more positive note most of us in England now have a “domestic pass” on the app which means we have equivalent status for events and early no self isolation etc. Which is the least you’d expect really yet that’s only been fixed pretty recently.

Signed. Bloody hellish. They've lost my vote.