A retired nurse who stepped up in the fight against coronavirus now feels 'trapped' as she's unable to travel abroad.
Liz King decided to take part in the Novavax vaccine trial last year before any other vaccines were approved.
The nurse had been told that if any other approved vaccines came on the market she would be able to drop out of the study to take it up.
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However, Liz noticed in her 36-page consent form that she would be 'discouraged' from having an approved vaccine because using it with Pfizer or AstraZeneca hadn't been tested.
Sadly for Liz, it now seems likely that if the Novavax vaccine is approved it won't be until 2022 and she is no longer allowed to get another vaccine.
This means that Liz, from Abergavenny, is unable to travel abroad and is also unable to get a booster vaccine.
She told WalesOnline : “I’m a retired nurse and felt incredibly guilty in the Spring of 2020 that I wasn’t able to help my ex colleagues during the first wave of Covid-19. So when I had the chance to volunteer for a vaccine trial I went for it.
“They said if an approved vaccine came on the market we could drop out of a trial, that was in the consent form but I also asked it verbally at my first appointment.
“It was a blind trial and 50% of the participants had Novavax and 50% had saline [a placebo]. I thought I had had saline because I had no side effects at all, not even a sore arm. I had the first one in November and the second at the beginning of December.
“The consent form said we would be discouraged from having an approved vaccine because using it with Pfizer or AstraZeneca hadn’t yet been tested. I wasn't worried about it because we were being assured that because the vaccine had done well in phase one and phase two trials and that approval was imminent - in a couple of months at least. I was offered both Pfizer in January and AstraZeneca in April but I was happy to stay on the trial because I had been told by this point I knew I had had the vaccine not the placebo and it appeared it would be approved.”
Brave volunteers like Liz have been left unable to access other approved vaccinations and are therefore ineligible to get booster vaccines and have no idea if they could face waning immunity.
“I had been emailing the health board for a month trying to get a response and they never came back to me,” she said. “Then I rang and I was told they would call me back and they never called me back. So on Saturday I went to the walk-in centre in Newport and after waiting an hour while they had several discussions they eventually 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 that she has had a vaccine. But because the vaccine is not approved she is facing the following problems:
“I am trapped,” she said.
“It really is like something from Kafka. It is exactly what it is like. It's not just me. There were 15,000 of us all across the UK but now some of them have jumped ship. I think some of them lied to get a different vaccine. Good on them, I wish I had. I don't know how many of us are left but there must be thousands of us in this situation.”
One of the frustrating things about this is that Liz took a risk to help develop the vaccines, but now is being affected to her detriment for doing so. She even volunteered at a vaccination centre this year.
“I've administered lots of other people's vaccines,” she said. “At the end of clinics sometimes we would have three or four doses left and we would be scrambling around to try and use up the remaining doses. I never once asked for one because I was committed to the trial I was doing.
“Now we are just stuck in this limbo. Last year they were all happy for us to take a jab and happy for us to do it. But now the nanny state is making decisions for me about whether or not I'm allowed a booster.
“I'm not speaking out for me, I'm doing it for all of us who were on that 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 thanks but if people like me hadn’t volunteered we wouldn't have vaccines. At the very least I shouldn't be inconvenienced after having volunteered.
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“I feel abandoned and so let down by the system. It is grossly unfair that people who volunteered to trial an experimental vaccine are at a disadvantage and have less rights and liberties than the general population. I will never volunteer again and will advise others not to.”
Liz is very keen to point out that she has no problem with the Novavax vaccine itself and doesn’t want to do anything to suggest it isn’t effective.
“I absolutely don't want to cast any doubt on the Novavax vaccine,” she said. “The science will tell us how good it is or not and I don't want to give any ammunition to anti-vaxxers. I'm not criticizing the vaccine in anyway - it's kept me safe for 10- 11 months.”
A Health and Care Research Wales spokeswoman said: "We really appreciate the hard work and involvement of all participants in Covid-19 vaccine clinical trials. Anyone participating in the Novavax trial should have had two active doses of vaccine and have protection against Covid-19. We are aware of the issue affecting some participants having additional vaccinations and are awaiting the Joint Committee on Vaccination and Immunisation (JCVI) to advise further on this.”