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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.