Like most Australians, Professor Gemma Carey has been vaccinated for COVID-19. In fact, she’s a passionate advocate for vaccination: “Vaccinations save countless lives every year, and the COVID-19 vaccines have saved millions from the type of difficult deaths we have come to associate with the virus.”
But her experience with the COVID vaccination has been complicated. In May 2021, Carey had a rare, serious, adverse reaction to the AstraZeneca vaccine that she said left her with “functional stroke” symptoms. Her gruelling rehab process has involved relearning how to read, write and talk while on leave from her job.
Even while recovering, Carey’s trust in the benefits of mass vaccination hasn’t wavered. She has acknowledged there is a risk — “Every medicine we take has the ability to harm as well as help” — and has since received the Novavax vaccine.
What has surprised her is how difficult she has found it to talk about her experience. Although vaccine side effects are uncontroversial and made clear to anyone who receives a vaccine, Carey said she and others in similar situations have felt uncomfortable talking about them.
These concerns come from a belief that their stories could be used by anti-vaccine activists and groups to undermine trust in vaccines. Or, worse, that others assume they’re telling their stories to undermine trust.
For years, Australia’s anti-vaccine movement has weaponised reports of vaccines’ adverse events by taking them out-of-context and twisting them to cast doubt on safety and efficacy.
Just this week, former federal MP and former Australian Medical Association president Dr Kerryn Phelps pre-empted criticism when she publicly shared that she and her wife had suffered vaccine side effects:
“People who have vaccine injuries are not anti-vaxxers, because they have turned up to have vaccines. They’re wanting to protect themselves against the serious consequences of COVID,” she told The Sydney Morning Herald.
Carey is worried this is stopping a public and frank discussion around issues like how vaccine side effects are being monitored in Australia and the difficulty of taking part in the government’s vaccination compensation program, a scheme in which just 2.5% of claims so far have been approved.
“The problem is that there hasn’t been full discussion around risks as they’ve emerged in the pandemic,” she said.
The ‘best vaccine safety system in the world’
Australia’s COVID vaccination program has been one of the most successful in the world. More than 64 million doses have been administered to 20 million Australians. As a result, Australia has had one of the lowest pandemic death rates in the world. Vaccines have helped lower death rates even as infection numbers grew and restrictions lifted.
Side effects are a known risk associated with vaccination, as they are with any other medication. They range from mild, temporary symptoms like a sore arm, headaches and chills, to rare and serious side effects such as myocarditis and thrombosis — two potentially life-threatening reactions that occur in about two people in every 100,000.
Side effects are common too — 44.1% of vaccinated Australians surveyed self-reported at least one adverse effect (just 0.9% of those visited GP or emergency department as a result). Ultimately, regulators around the world have judged that the benefits of COVID vaccines significantly outweigh the potential harms. Australia’s decision was based on vaccine developers’ trials and research before release and then surveillance by health authorities since they’ve been rolled out.
In response to the speed at which vaccines were developed and rolled out, Australia has created what vaccination expert Julie Leask, a professor at the University of Sydney’s school of nursing and midwifery, called the “best vaccine safety system in the world”.
Here’s how it works: patients who’ve received vaccinations are automatically surveyed by their state Health Department via phone or email about whether they experienced any side effects three days and eight days after their first vaccination; and then six weeks after their second dose.
Depending on the response, staff may follow up the survey with a phone call. Patients are also able to report adverse effects to their doctor, to the NPS MedicineWise Adverse Events line, or directly to the Australian medical regulator, the Therapeutic Goods Administration (TGA).
These reports are fed directly to a weekly meeting of state health departments, the TGA and the National Centre for Immunisation Research and Surveillance (NCIRS) which then consider whether the data of reported side effects differs from what they would expect based on trials.
NCIRS staff specialist and clinical lead for AusVaxSafety Dr Lucy Deng said that it was common to discover new side effects after the approval of a vaccine: “There are rare events that don’t always get picked up in clinical trials because there can be a one in 10,000 chance or fewer that they happen.”
Take myocarditis, a condition where the heart muscle becomes inflamed. It appears in the general population independent of COVID vaccines and is common after someone suffers a viral infection (such as COVID-19).
When this committee received reports of myocarditis in vaccine recipients, Deng said, health officials compared this data with levels of myocarditis expected in the community to determine whether it was out of the ordinary.
Special attention is given to cases where a vaccine was linked to serious illness or someone’s death which spark an individual investigation by a committee. From there, they were about to drill down into different questions such as whether certain parts of the population were disproportionately affected and whether certain types of vaccines were more likely to cause them.
Now myocarditis has been identified as a side effect for mRNA vaccine recipients, more common following a second dose for boys aged 12 to 17 and men under 30. This information is used to inform regulators, health practitioners and, in turn, patients so they can give informed consent and be alert to possible side effects.
Australia has specialist immunisation services that treat people who’ve experienced adverse reactions and provide individualised advice for treatment. Then, for Australians who can prove they’ve suffered side effects, there’s a government-run compensation scheme that covers those who’ve suffered injury or loss, even in the case of death.
“We do have a good system,” Leask said. “Although sometimes the awareness of some of these mechanisms and openness to have discussions can leave people disappointed.”
Gaps in the vaccine data collection
Carey has been recorded as someone who experienced a vaccine side effect, but said that the full extent of her condition is not captured in government data: “After six weeks, the surveys stopped coming and not once did anyone call me. That’s 54 weeks of missing data on how the vaccine set my body at war against itself, creating growing pain and disability.”
Carey also has other concerns about factors that might be affecting the quality of data being collected about vaccine adverse events.
She said the clinical trials of vaccines were done on the general population and, as a result, might have different effects on different groups like those with disabilities — something that Deng noted as one of the rationales for the vaccine surveillance program.
“I had a neurological disorder 10 years ago, and I think that may be the reason I had a bad reaction to the vaccine. If I had access to more information, I would have held off and gotten the Novavax,” Carey said.
Carey is part of a yet-to-be-filed class action suit against the TGA that accuses it of failing to inform vaccine recipients of the full extent of possible health risks. Meanwhile, she’s yet to seek compensation through the government scheme even after a year off work because the harm (and associated cost) is still ongoing.
Unlike some other countries, Australia’s COVID-19 vaccination program doesn’t have an automatic entitlement to compensation if a patient is diagnosed with certain conditions. Instead its scheme requires going through an individualised assessment process for each claim. As of November 23, just 79 claims had been approved from 3100 applications, totalling $3.9 million. The process has been criticised as “complex” and “onerous”.
The Department of Health defended the scheme as easier, faster and less costly than a typical personal injury claim pursued through the courts: “Evidence to substantiate a claim based on the scheme’s eligibility requirements is appropriate and necessary when considering the use of taxpayer funds for compensation.”
What happens when you get sick after a vaccine but it’s not a proven side effect?
At first, Michelle Grace Hunder didn’t have any side effects from the vaccine. It was only a few days after her first Pfizer jab that she started to feel unwell: dizziness, heart palpitations and stabbing chest pain. A friend who works in nursing advised her to go to hospital to get checked out. She had bloodwork and an echocardiogram done on her heart — all fine.
“The doctor pulled me aside and said there’s lots of anxiety around vaccinations and it seems to be causing a lot of stress and ‘I don’t want you to avoid getting the second one’,” Hunder said.
As someone who had talked her friends into being vaccinated and describes herself as being the most “trust the science person you can meet”, Hunder agreed. After a few weeks her symptoms settled down and things returned to normal. When it came time for her second dose, she didn’t hesitate.
Hunder, who works as a music photographer, needed to get it for work and she hoped that the first time around was a fluke. It wasn’t. She started experiencing similar symptoms but “on steroids”. She went to the hospital three times that month to seek help for episodes where she felt like she was having a heart attack, only to leave without answers that satisfied her.
“The third time was the worst experience,” she said. “I didn’t get to see a doctor but a nurse pulled me aside and said, ‘I don’t know what you want us to do for you — you should seek therapy for your issues,’” Hunder recalled.
Even after being referred to her long-time GP, Hunder was recommended an anti-anxiety medication as a treatment. Symptoms eventually began to subside after she saw a naturopath and made lifestyle changes.
Then a breakthrough. Hunder was officially diagnosed with postural orthostatic tachycardia syndrome (POTS), a condition that explained her symptoms. She was relieved to finally have an answer for what she felt happened to her body after vaccination and could start to seek treatment.
There was one problem: it is not recognised in Australia as a side effect of COVID-19 vaccines. Even though some recent, early research has suggested there may be a link between vaccines and COVID-19 to POTS, the TGA does not yet list it as a side effect.
Hunder is relieved she has an answer but is frustrated it has not been recognised as a vaccine side effect. She is not eligible for the government vaccination compensation scheme (the Health Department told Crikey there are seven clinical conditions that are eligible under the scheme and POTS is not one). It also complicates getting a vaccine exemption if it’s ever necessary.
Regardless of whether her condition is accepted as a vaccine side effect or not, Hunder described the process of seeking care when she had become ill after vaccination as “demoralising, embarrassing, eye- opening”.
She took time off work to try to recover. Even walking up the stairs in the “dream house” she bought six years ago has become arduous. All the while, Hunder said, representatives of the medical system had repeatedly told her that she wasn’t sick.
Hunder remembered breaking down crying when a GP said they believed her: “I feel like I’ve got my head on pretty straight. So to present to the ER and be told to seek therapy? I think about it and get emotional. It was just shocking to be in distress and to be sent away.”
‘A robust vaccination program should be able to look at criticism’
Carey and Hunder said they waited months to speak publicly about their experiences. Both said their experiences had been validated when they found online communities who also have suffered or believe they’ve suffered similar vaccine side effects. Still, they feared how their story would be received and how they would be perceived.
Hunder said she’s faced a backlash for talking about her experience with the vaccines. Carey joked that anti-vaccine campaigners love her — at first: “On Twitter, there’s an assumption that just because you’ve had a vaccine injury, you must be anti-vaxx. Well, I ended up getting successfully vaccinated later on.”
The fear of anti-vaccine groups using their stories isn’t hypothetical. Hunder was dismayed that a UK group that promised to help people who’ve suffered vaccine side effects ended up embracing a full-blown anti-vaccine policy position.
“It was co-opted for their own reasons; they were trying to get a vaccine rollout halted,” she said.
Both of them claim this fear extends to doctors being reluctant to provide vaccine exemptions or talk publicly about vaccine side effects for fear of professional repercussions.
The Australian Health Practitioner Regulation Agency told Crikey that it supports doctors’ rights to make assessments for their individual patients and “has not taken any disciplinary actions in relation to doctors who have done this”.
The desire to get attention for their plight also leads them to uncomfortable alliances, like with Queensland LNP Senator Gerard Rennick who posts unverified vaccine side effect antidotes and, increasingly, anti-vaccine rhetoric (“It’s extremely unfortunate that he’s the only person who will listen to us,” Hunder said).
The pair told Crikey they hoped their stories could help improve Australia’s vaccination program. For Hunder, this means improving patient care and training healthcare professionals to be more aware about what can happen post-vaccine. Carey hopes an improvement in data collection will lead to better-informed patients and the development of even safer vaccines.
Leask admitted there was a tendency to be reactive about anything “that might vaguely look like it’s anti-vaccine” in public discourse, including people’s questions about vaccine safety or talking about the need for a vaccination compensation scheme. She attributed this to both the efforts of anti-vaccine activists as well as the defensiveness of people hoping to maintain trust in vaccines.
Leask said Australians need to be comfortable enough to acknowledge that vaccines have rare yet serious side effects. Denying this, she said, can ironically give oxygen to anti-vaccine figures and groups.
“A robust vaccination program should be able to look at criticism,” she said.
Leask said 97% of Australians have received a COVID-19 vaccine even amid widespread (and in some cases irresponsible) coverage of side effects and the best efforts of anti-vaccine campaigners: “This tells you a lot about the public being able to weigh risk in everyday life, and why we shouldn’t patronise people.”
Deng said it was important to be able to freely discuss and debate vaccine policy. She mentioned Australia’s compensation scheme as one area worthy of further discussion.
She reiterated the importance of ensuring that people feel comfortable to report any adverse events after vaccines as crucial to maintaining trust in Australia’s vaccination program: “Vaccine safety is like citizen science. Monitoring it requires everyone’s input. That’s why you need people to believe in the system.”
Update: This article was originally published with comments from experts regarding the link between POTS and COVID-19 vaccines provided in November. These have been removed in light of research published this month.
Strange that the headline makes this story all about X “feeling silenced” by Y, instead about the substance of the story.
So, what is the substance of the story? It’s that some people have side effects from vaccination, or, perhaps it’s that some people have adverse medical conditions which are caused by unknown factors.
The story is about mystery – unknowns. Science is simply a process for investigating unknowns. It isn’t a magic bullet, or a football team, or a political party – it’s just a way to organise investigations using logic.
If we had more articles presenting phenomena such as this, with intelligent, informed discussion about how to investigate and how to proceed as best we are able with less than 100% certainty, our society might get to know science for what it is, and grow more sophisticated in dealing with uncertainty. When it comes to public health, that would be a good thing. In fact, it’s fundamental to public health.
Agree, maybe some articles on science research process versus media based personal narratives. The latter are simply anecdotal and till embedded within a science process leaves many ignorant.
Phelps’ media comment was jumped on while she demanded more research, but why not more research (inc. much already in the public domain & offshore esp.), presented, then relate back personally?
Reminiscent of the global campaigns around climate science denial then Covid too; political media preference for personal narratives of influencers and outliers over science and analysis?
Agree, maybe some articles on science research process versus media based personal narratives. The latter are simply anecdotal and till embedded within a science process leaves many ignorant.
At long long last, a frank & non-hysterical discussion about the downside of Covid vaccines. This is way overdue.
I had permanent side-effects from two AstraZeneca shots & reported it to the TGA. However, several friends/acquaintances have had vaccines with ongoing consequences & only one of them has contacted the TGA. Three more developed peripheral neuropathy almost overnight – from both Pfizer & AZ – none has reported to the TGA. Hence, there’s a dormant trove of information which is skewing the data collected by medicos. As science is based on facts it appears that many facts are currently withheld.
When I mention my newly acquired impairment it is often derided, apparently I can’t prove it is related to the AZ despite appearing five days after the first shot & becoming worse with the second. During this time I longed for an intelligent conversation on the subject but was accused of being ‘anti-vax’ (which I’m not) or ‘selfish’ for refusing to commit to further risk by having boosters. Suddenly I was made to feel anti-social.
There seemed to be no middle course for debate consequently it’s a relief to see a ray of hope that those who report deleterious effects will be heard without knee jerk condemnation.
I’m sorry that happened to you. Just because something happened after something else doesn’t mean it was caused by it. I had a friend who dropped dead of an aneurysm in her 20s, that over a decade ago. There are people that developed symptoms that you describe before Covid and before vaccines.
This is another dimension to misinformation – people reporting problems with lock downs and vaccines or advocating for alternative treatment options get lumped in with the cookers.
We get the msm we deserve. For years we have been too tolerant of poor, inaccurate, even untruthful and deliberately misleading, reporting.
“we get the MSM we deserve”
HalleluYAH to that. But dear Cam,.what kept you? For months and even years you have been relentless in your attacks on people and groups who have been shouting from the roof tops about the dangers of vaccines…”those antivaxxers, those lunatic fringes, those with extreme right views, those nut jobs”..and on it goes. The truth is those so called “anti-vaxxers” were the only people who stood between the MSM misinformation juggernaut and the possible pharmaceutical/health complex slaughter.
Having said all that, after today and probably your best article ever on Crikey, you are absolutely forgiven and I congratulate you for your courage to speak up on behalf of all the voiceless ones alive today and those born tomorrow.
The antivaxxers were the ones running the misinformation juggernaut.
There definitely were (and are) anti-vaxxers who who pumped out misinformation.
But govt’s and the mainstream media were culpable of pushing the line that covid vaccinations stopped transmission of the SARS-COV-2 virus, despite an absence of evidence. This line has now been retracted, and it’s promulgation is now frequently denied by those who trusted this mainstream rhetoric. These ppl now truthfully say that vaccination is about reducing hospitalisation, but try to sell the story that this was always the case, despite clear, contrary evidence.
So, as displayed in this excellent article, nuance is required. Life is grey, not black and white. No one side is completely right or wrong. Both have stuffed up.
I don’t feel silenced by anti-vaxxers, they are irrelevant to me. I felt silenced by the medical profession. I was wary of the new mRNA vaccines so I opted for Astra Zeneca.
After my second dose I suffered very severe chest pains for weeks afterward, it got so bad at one point that I started going blue and my wife called an ambulance fearing I was having a heart attack.
I went through weeks of tests to determine if I had blood clots (that was the theory of the day, that AZ caused blood clots), once they could conclusively rule out blood clots it was all just palmed off as a chest wall infection and no one was interested in investigating any further. Their only interest was in ruling out blood clots, it was never officially reported as a vaccine side effect and despite telling me it was a chest wall infection they didn’t prescribe antibiotics or anything, I was just politely shown the door with my extremely dubious diagnoses.
After the experience I had, I will not take a covid vaccine again.
That must have been really frightening for you both, Simon. I’m really sorry to hear that you had both an adverse reaction, and was poorly treated by the health system.
What an awful experience. I am sorry you experienced that. The difficulty is working out if your symptoms were caused by the vaccine, you may have had this experience without having the vaccine but there’s no way to know that. I think people were confused about AZ and mRNA, both of those vaccines do the same thing, send a message to cells to create the spike protein. Novavax has the protein in it, i. e.. your cells don’t have to make it.
Sounds awful, I’m sorry to hear of your trauma. Are you making a general point, though?
Hi Simon,
I hear you.
A colleague of my partner, who was very much in favour of covid vaccination, and worked in the ICU of my local hospital for >20yrs, felt a bit off after 1st AZ, but thought nothing of it. After her 2nd though…excruciating pain, lost ability to walk, and spent months in hospital. When discharged, she still couldn’t walk, and has since been diagnosed as having vaccine-induced myocarditis…but myocarditis isn’t recognised as a symptom of AZ, only of the mRNA vaccines, so she’s unable to get work cover / compensation.
Stories like this drive anti-vaxx sentiment as much as anything else, IMO.
Suggest that you change your doctor
Well done Cam.
I can see that this article wasn’t easy for you to write, but it is a welcome change to some of your earlier offerings which failed to acknowledge that Covid vaccines can and have caused harm, even if only small in number.
I understand the fear that Carey and Hunder speak of…I’ve been called an anti-vaxxer on these very pages for trying to draw attention to some anti-establishment thoughts on Covid. I too just want a full and frank discussion. And like Hunder, it really gets my goat that the only ppl in power who have given this stuff any air-time are from the rabid right. Growwwwwl. Where are my fellow lefties, demanding social justice, looking out for the little guys who have been hurt??
I have always acknowledged that COVID-19 vacines have a risk of side effects, much outweighed by the risk of catching COVID-19 and being unvaccinated for most people. That’s because that is what the science has always shown.
This is not what the “science” has always shown. There is a *very* steep age stratification of risk of injury from COVID, and the inverse age stratification of risk from vaccine injury. Cam, please look up “median age of death from COVID”. If you do the proper “sciencing” you might be surprised.
It’s not only people from the right who raised questions about health issues following a Covid-19 Vaccine.
However, the ‘rabid right’ became a more convenient target for accusations related to conspiracy theories when they reported on vaxx injuries. This, I assume, is why many ‘fellow lefties’ stayed schtum, for obvious reasons – after all, who wants to be aligned with those people? So much better to self-censor.
Some are now, belatedly, like Phelps, prepared to stick their above the parapet. I’m sure other notable lefties will feel quite ok – now – to publicly register their concerns about post vaxx injuries.
The bigger question is why now, when it’s been obvious for two years?