They also have not been able to access other approved vaccines and therefore are not eligible to receive booster vaccines and have no idea if they might face waning immunity.
Liz King from Abergavenny showed up to test the Novavax vaccine last year.
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She told WalesOnline: ‘I am a retired nurse and felt incredibly guilty in the spring of 2020 for not being able to help my former colleagues during the first wave of Covid-19. So when I had the chance to volunteer for a vaccine trial, I went.
Liz was initially told that if other approved vaccines hit the market, she could drop the study and resume it.
“It was in November before the vaccine was approved,” she said. “It said if an approved vaccine hit the market we could abandon a trial, it was in the consent form, but I also requested it verbally on my first appointment.
“It was a blinded trial and 50% of the participants had Novavax and 50% had saline solution [a placebo]. I thought I got saline because I had no side effects, not even arm pain. I had the first in November and the second in early December.
There, Liz was asked to sign an updated consent that was 36 pages long. She scanned it and signed. On reading more closely, she realized that there was a small but significant change.
She said: “He said we would be discouraged to have a vaccine approved because its use with Pfizer or AstraZeneca had not yet been tested. I wasn’t worried about this because we were assured that because the vaccine had performed well in phase one and phase two trials and approval was imminent – in a few months at least. I was offered both Pfizer in January and AstraZeneca in April, but I was happy to stay on the trial as I was told at this point that I knew I had had the vaccine and not the placebo. and it looked like it would be approved.
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Fast forward so far and it seems likely that if the Novavax vaccine is approved it won’t be until 2022. Liz has tried to get another vaccine such as Pfizer but is no longer licensed.
“I had emailed the board of health for a month trying to get a response and they never responded to me,” she said. “Then I called and was told they would call me back and they never called me back. So on Saturday I went to the walk-in center in Newport and after waiting an hour while they had several talks they finally said no because I had been given the trial vaccine – when they said no, i just burst into tears.
Liz is able to get a Covid pass because the NHS app acknowledges she has had a vaccine. But because the vaccine is not approved, she faces the following issues:
- She cannot travel abroad where a vaccine is required.
- She has no idea if the vaccine she took is actually giving her full protection, as the final results are not known.
- Even though she is protected, she does not know if this immunity will weaken.
- She is unable to get booster shots.
“I’m trapped,” she said.
“It’s really like something from Kafka. This is exactly what it is. It’s not just me. There were 15,000 of us across the UK, but now some of them have left the ship. I think some of them lied to get a different vaccine. Sincerely theirs, I would have liked to have. I don’t know how many of us stayed but there must be thousands in this situation.
One of the frustrating things about this is that Liz took a risk to help develop the vaccines, but is now affected to her detriment to do so. She even volunteered at a vaccination center this year.
“I have given a lot of vaccines to other people,” she said. “At the end of the clinics, we sometimes had three or four doses left and we would scramble to try to use the remaining doses. I never asked for one because I was involved in the lawsuit I was doing.
“Now we’re just stuck in this limbo. Last year they were all happy for us to take a jab and happy for us to do so. But now the nanny decides for me whether or not I’m entitled to a callback.
“I am not speaking for myself, I am speaking for all of us who participated in this trial. I want to have to approve vaccines and I want to be in the same position as the rest of the population.
“I don’t want a thank you, but if people like me hadn’t volunteered, we wouldn’t have vaccines. At the very least, I shouldn’t be inconvenienced after volunteering.
“I feel abandoned and therefore let down by the system. It is extremely unfair that people who have volunteered to try an investigational vaccine are at a disadvantage and have fewer rights and freedoms than the general population. I will never volunteer again and will advise others not to.
Liz is keen to stress that she has no problem with the Novavax vaccine itself and does not want to do anything to suggest that it is not working.
“I absolutely do not want to cast any doubt on the Novavax vaccine,” she said. “Science will tell us how good it is or not and I don’t want to give anti-vaccine ammunition. I’m not criticizing the vaccine in any way – it kept me safe for 10-11 months. “
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