‘It’s killing us’: Family’s horror arm-wrestle with vax scheme

A family has accused a government vaccine compensation scheme of “medical gaslighting” after it seemingly shrugged off a chorus of expert evidence.

Australia’s Covid-19 Vaccine Injury Compensation Scheme is sold as a “simple, streamlined process to compensate eligible people, without the need for complex legal proceedings”.

But for a NSW couple, that couldn’t be further from the truth.

Sandra Byron and Ashley Russell from West Pymble in Sydney’s north say they are near destitute and face imminent homelessness since the compensation scheme recently rejected their claim.

This came after months of battling bureaucracy in a process that Mr Russell described as “medical gaslighting”.

Ms Byron’s life took a dramatic turn in May 2021 after rolling up her sleeves during the AstraZeneca rollout.

The 53-year-old was one of the small number of Australians to suffer a severe adverse reaction.

Her husband has spent the year-and-a-half since caring for his wife full-time after a complication with her first dose of AstraZeneca left her with clinically recognised “severe disabilities”.

“It’s destroyed my wife’s life,” he told news.com.au.

Sandra Byron, 53, was ‘happy and healthy’ before her life took a dramatic turn after her first AstraZeneca shot in May 2021. Picture: Karl Schwerdtfeger

“I’ve spent the last 16 months looking after her – she can’t work, and I can’t work, and we’re about to lose our house.

“I haven’t been able to hold my wife for 16 months because her hands and skin are so badly damaged through the capillary leak syndrome.”

Ms Byron’s latest psychological report suggests she is on the brink of suicide.

Mr Russell said he has been unable to work enough to support his family due to the care needed by his wife.

“It’s destroyed my business – I’ve just had to pick up some casual work just to put food on the table,” he said.

“My son is now looking after Sandra because he’s just finished uni and can look after her during the day. It’s just a nightmare – it’s killing us.”

Mr Russell said his wife now carries “more than 10kg of fluid on her” because of the lymphedema – from capillary leak syndrome and what is believed to be Guillain-Barre syndrome – which several treating physicians have officially linked to her AZ shot on May 24, 2021.

For the most part, she spends her days bedridden and suffering chronic pain despite being “perfectly healthy” before her inoculation. 

Ms Byron carries more than ten litres of fluid after new reaction to the Covid-19 vaccine.

But the government was “not reasonably satisfied that [Ms Byron] suffered harm” and knocked back her claim for compensation August 24.

Mr Russell and his wife feel they have been “lumped in with anti-vaxxers” by administrators of the scheme.

“We are not anti-vaxxers – I have been vaxxed four times myself,” Mr Russell said.

“We are both in favour of the vaccine rollout – it’s done a lot of good.”

Unable to even write, Ms Byron is now in the process of dictating an impact statement as she and Mr Russell prepare to appeal the decision by the Covid-19 vaccine injury compensation scheme.

“Sandra’s dictating to me the damage that’s been done due to not only vaccine, but what this scheme has done – the medical gaslighting – I can’t begin to tell you,” he said.

Ms Byron’s letter of outcome for her claim, seen by news.com.au, included the expert opinions of seven doctors – who all linked Ms Byron’s complications to the AstraZeneca vaccine.

One GP who has provided ongoing care to their case wrote about her pain and suffering after the AZ injection throughout numerous reports to the scheme.

He said Ms Byron began showing signs of thrombosis and thrombocytopenia soon after the injection, followed by acute bruising, broken capillaries and bulging veins – afflictions she is still crippled with.

“I reassert and repeat my previously submitted medical statement that the [Guillain-Barre syndrome] and her other claimable conditions resulted from her acute systemic inflammatory response to [AstraZeneca],” he has since written.

Husband and wife Sandra Byron and Ashley Russell say it has been a ‘nightmare’ seeking help through the Covid-19 vaccine compensation scheme.

Another official report from a General Medical Registrar at Hornsby Ku-ring-gai Hospital, where Ms Byron first presented, linked the vaccine to her adverse reaction.

“We wish to advise that Sandra Byron experienced a serious systemic adverse reaction to the AstraZeneca vaccine in the days to weeks after her first dose. We have registered this adverse reaction with NSW Health,” she wrote.

A Randwick neurologist also linked the vaccine to her conditions.

“It is my view that these ongoing problems are a direct consequence of the AstraZeneca vaccination,” he wrote.

“It is likely that she suffered a mild attack of Guillain-Barre syndrome, which is well recognised to occur more commonly following Covid-19 vaccination.

“It is likely there has also been subtle post-vaccination encephalitis, given the prominence of hallucinations and delusions during the early course and ongoing cognitive problems.

“She has improved very substantially from the first two to four weeks but still has significant ongoing disabilities.”

Despite this, Ms Byron’s claim was deemed “not payable”.

In a 64-page response, a delegate from the Secretary of the Department of Health said: “After considering the presently available information, I am not reasonably satisfied, on the balance of probabilities, that you suffered a “Covid-19 Vaccine Related Harm”.

“In particular, while it can be accepted that you experienced a reaction to the vaccine, it is my view that there is presently no diagnosis from a relevant treating practitioner that is sufficiently definitive to enable me to be satisfied that you suffered TTS [thrombosis with thrombocytopenia syndrome], CLS [capillary leak syndrome] or GBS [Guillain-Barre syndrome] as a result of receiving the AstraZeneca vaccine.

Sandra Byron has spent over a year-and-a-half in chronic pain.

The extensive Statement of Reasons, formed with a recommendation of an unnamed “medical officer” and a member from an “independent expert panel”, meticulously picked apart evidence, opinions, qualifications and even phrasing of the medical professionals who had put their names to the claim.

“[Two specialists] only suggested that it is possible that you suffered from GBS,” the decision read in one instance.

“I do not consider an opinion that you may possibly have suffered from GBS is a sufficient basis for me to be satisfied, on the balance of probabilities, that you suffered from that condition.

“While [the Randwick neurologist] ultimately considered that you ‘likely’ suffered from GBS, I do not consider that he satisfactorily articulated the clinical basis for that view.

“The opinion of the Medical Officer is that there is insufficient evidence to make a diagnosis of GBS.

“The Medical Officer concluded that, while there was evidence of neurological symptoms and signs, these were not corroborated by other clinical data, such as investigation results or treatment, that confirmed a diagnosis of GBS diagnosed by a neurologist contemporaneous to the date of diagnosis. As noted above, I accept the opinion of the Medical Officer,” it concluded. 

A gastroenterologist and a haematologist are now treating Ms Byron for serious internal damage caused by what they are confident is Guillain-Barre syndrome – a condition which the scheme thinks she does not have.

“We’re seeing a gastroenterologist because of something that [the scheme] said she hasn’t got. “It’s Orwellian. It’s just ridiculous,” Mr Russell said.

The two most recent specialists to treat Ms Byron for GBS – after her claim was rejected – have linked her condition to the vaccine, and have put their names behind Ms Byron’s appeal.

Sandra Byron’s limbs have been filled with fluid since May 2021 after her first AstraZeneca vaccine.

“Her GP, neurologist, haematologist, and other senior doctors in her care have all expressed their evidence, and I agree with them, that she has acquired an acute systemic inflammatory reaction as an adverse reaction to an AZ vaccination leading to subsequent chronic conditions,” a Sydney gastroenterologist wrote.

They too said it was “highly likely” that Ms Byron suffered from GBS related to her AZ shot.

“It is highly likely that majority of her chronic abdominal symptoms are arising from post-Guillain Barre syndrome, which was in relation to the AZ vaccination as confirmed by her other specialists,” they wrote.

The Sydney haematologist also backed the link.

“Ms Byron is essentially housebound with chronic pain. She is dependent on her husband as her full-time carer,” they wrote.

“Concurrently, she developed a constellation of neurological symptoms which has subsequently been diagnosed as Guillain-Barre syndrome by two neurologists and attributed to the AstraZeneca vaccine.

“I believe that the constellation of marked peripheral oedema, haemoconcentration and electrolyte abnormalities within the appropriate time frame of vaccination supports the diagnosis of AstraZeneca-induced capillary leak syndrome, and this is a major contributor to Ms Byron’s current degree of disability.”

Specialist doctors involved in the initial claim have now written new letters to accompany Ms Byron’s appeal.

Sandra Byron’s swollen ankle.

”I think it is likely that Sandra Byron had Guillain Barre syndrome in 2021 and that this was secondary to the AstraZeneca coronavirus vaccination in the absence of any infective or other aetiology,’ one neurologist involved in the initial claim reaffirmed. 

“We ought to bear in mind however that since that time, you had been given additional diagnoses and also that at the time we were less aware of potential vaccine side effects,” a treating nephrologists also wrote as part of the appeal. 

Today, 11 doctors from a range of specialties are convinced her ongoing and debilitating condition is linked to her vaccination. 

That’s in stark contrast to the rejection letter informed by one “medical officer” – whose medical qualifications are not disclosed – telling Mr Byron and Mr Russell their claim was “unpayable”.

“I am not reasonably satisfied that you have suffered a ‘harm’ as defined in the policy,” the letter of outcome from the delegate of the Secretary of the Department of Health said in the rejection letter.

In October, two of the nation’s top personal injury lawyers flagged with news.com.au a plethora of faults with the “complex” scheme after it was revealed a “pitiful” 59 of 2987 claims had been approved.

They claimed the scheme was “arduous and unclear” while not keeping up with updating information regarding vaccine injury.

“They’re all safe approved, the manufacturers have done the relevant testing, and we’re trying to contain the pandemic,” Shine lawyers’ national practice leader in medical law Clare Eve said.

Shine Lawyers national medical negligence manager Clare Eves. Picture: Ryan Young

“We want everybody to get vaccinated and the unlucky few who have an adverse reaction, which is going to be a small amount, we want to help and support and look after you. And that’s not what the scheme has done at all.”

In response to the couple’s ordeal with the scheme, a Department of Health and Aged Care spokesperson said the scheme’s expert review panel were from firms with “experience in personal injury law, administration law and compensation”.

“The weight given to the specialist’s opinion of what caused a reaction will depend on a range of factors, including how that diagnosis was made, the timing of the diagnosis and specialist involvement in relation to vaccination and symptom onset, including any relevant diagnostic criteria, case definitions and tests, investigations undertaken and the nature of the treatment received, in addition to the specialist’s opinion as to the extent to which the harm was most likely caused by the Covid-19 vaccine (or its administration) and less likely caused by any of the Covid-19 vaccine recipient’s other circumstances,” the statement said.

And in response to some advice from a GP and other physicians provided to the claim which was ultimately dismissed, the department said: “The guidance states the relevant fields of practice for Guillain Barre syndrome (GBS) are neurology, immunology and paediatrics if appropriate.”

Just 75 claims have been approved under the scheme of the 3071 submitted. Picture: Johan Ordonez

“General practitioners may be the reporting practitioner for GBS and report on the findings of a treating practitioner, however a GP cannot be the treating practitioner.”

As of November 9, Services Australia has approved 75 of 3071 claims made.

Of the remaining claims, 1471 require further information from applicants, 166 claims have been withdrawn, 188 claims have been deemed not payable and 1171 claims are in progress.

The Covid-19 Vaccine Claim Scheme has so far paid out $3.8 million, according to Services Australia.

As for Ms Byron and Mr Russell, they’ll continue to reinforce their appeal as perilous circumstances close in.

Their claim is seeking compensation for past and future care, pain and suffering and loss of wages due to Ms Byron’s ongoing treatment.

“If it doesn’t get sorted, Sandra and I will literally lose our house and lose everything,” Mr Russell said.

“I’ve had to sell, like all my favourite collectors’ items and personal items just to put food on the table and keep the wolf from the door.”

“I can’t believe a government that’s meant to be caring for people the way this Government said they were can do this to people.”

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