Tristan Stanley still remembers being in his swimming trunks ready to jump in the pool at his friend’s house when one of the parents stepped in.
‘Everyone was going in and the parent turned to me and said, “If I let you go in the pool are you going to give my kids Hep C?”‘ Mr Stanley recalls.
‘As a 12-year-old kid, that’s pretty confronting.’
Mr Stanley, now 44, is one of thousands of Australians infected with hepatitis C – many of them as very young children – in a shocking infected blood scandal few have heard about.
Unlike in the UK, where the infection of more than 30,000 unsuspecting children and adults with hepatitis C and HIV caused national soul-searching leading to a compensation scheme, victims of Australia’s similar health-system failure continue to be shunned.
Adding to the horror, Mr Stanley claims he was treated like a ‘lab rat’ by a doctor who covered up his viral infection, hiding it from the man’s family and even other treating physicians, perhaps in order to better study it.
Mr Stanley says it is a myth that ‘Australia had a better response to infected blood than the UK did’.
‘We didn’t at all,’ he tells me.
Tristan Stanley is one of thousands of Aussies infected with hepatitis C, many of them as young children, in a shocking infected blood scandal few have heard about
A 2004 Senate inquiry heard Red Cross estimated that 3,500 to 8,000 Australians were living with hepatitis C delivered in blood transfusions and products.
The inquiry found 80 to 90 per cent of hemophiliacs were infected, with the overall total estimated to be 13,500. However, because there is no post-transfusion reporting system, the numbers are by no means exact.
It is estimated about 250 haemophiliacs also contracted HIV from infected blood.
Bewilderingly, the inquiry did not recommend a national compensation scheme for victims, finding ‘it was not in their best interests’.
By contrast, following this year’s UK inquiry, headed by senior judge Sir Brian Langstaff, the British government put aside $22.9billion to compensate victims and their families.
With the emergence of effective treatment for hepatitis C in 2011, Mr Stanley and many other sufferers have been cleared of the disease but are still haunted by the decades of physical and mental damage it inflicted.
Hepatitis C can only be transmitted through blood-to-blood contact, not by saliva or any other bodily fluid.
However. because of misunderstanding around the disease Mr Stanley says that during his teenage years, parents forbade him from going out with their daughters for fear of them catching it.
A 2004 Senate inquiry heard Red Cross estimated that 3,500 to 8,000 Australians were living with hepatitis C delivered in blood transfusions (stock photo of a blood bag)
Mr Stanley was diagnosed as a haemophiliac, a condition where blood does not clot properly, at just 18 months of age.
The treatment supplied for Mr Stanley’s haemophilia was clotting agent Factor VIII, which has been derived from donated human blood plasma since the 1970s.
Unfortunately, some of that plasma carried hepatitis C, a potentially life-threatening virus that attacks the liver, causing lethargy, jaundice, cirrhosis, scarring and cancer of the vital organ.
Hep C was called Non A, Non B Hepatitis until the virus was isolated in a chimpanzee in 1988 leading to the creation of antivirals in 1990.
‘No one ever told my parents the risks,’ Mr Stanley says of the blood products. He tells me he knows of some haemophiliacs who died from liver cancer.
Former world darts champion Tony David has needed three liver transplants after contracting hepatitis C from plasma-derived clotting agent Factor IX given to him as a child in Queensland to treat his haemophilia.
‘There’s a lot of people out there that this has happened to,’ Mr Stanley adds.
‘Unfortunately a lot of people don’t want to speak out about it because of the stigma.’
‘There are people backed into a corner because they don’t want it to get out there that it is affecting them in this way and it is costing them businesses or relationships.’
Mr Stanley was only aged around six when he was likely infected with hep C from infected blood
Mr Stanley alleges his haematologist diagnosed he hep C in 1986 when he was aged six – and he has the documents to prove it.
‘He didn’t tell my parents, he didn’t tell me, he kept it to himself,’ Mr Stanley claims.
Mr Stanley believes this was part of a wider government cover up.
‘Haemophiliacs were used as guinea pigs,’ Mr Stanley says. ‘There was even a comment made in the UK inquiry that haemophiliacs were cheaper than chimpanzees.’
After asking for a copy of his medical records, Mr Stanley discovered the specialist tested his ALTs, a protein that increases markedly in hep C sufferers, in December 1986.
‘My ALTs were through the roof, they should be under 30 and mine were 149,’ he says.
‘They couldn’t test for Hep C back then but they knew it was in the blood.’
In the letter, seen by Daily Mail Australia, the doctor writes Tristan’s ‘AST and ALT are quite markedly elevated (AST 107, ALT 149), which I guess represents exposure to non-A non-B Hepatitis’.
Despite successfully deducing Mr Stanley’s condition, the specialist did not disclose this to his young patient’s parents.
In 1987, the family went to see the specialist and told him Mr Stanley was always tired, a symptom of hepatitis C.
‘I had swollen glands as well which is another sign something is wrong,’ he tells me.
‘In my notes, he wrote that I was tired all the time because of bad behaviour and staying up late and my glands were swollen due to cat scratch disease, and neither of those were true.
‘Despite a few months earlier writing that I had been exposed to Non-A, non-B hepatitis, the doctor chose to attribute these symptoms to other causes and again failed to inform my parents.
‘My brother had a liver that was so swollen doctors actually felt it. They didn’t say anything. He was four.’
Mr Stanley and his brother were formally diagnosed with hepatitis C in 1990, after the test became available.
Even after this, the specialist allegedly continued to downplay the symptoms and tried to discourage the boys’ father from taking them to a gastroenterologist for further treatment.
Mr Stanley’s dad insisted, so the specialist wrote a referral.
In the letter, seen by Daily Mail Australia, the doctor wrote ‘fortunately there [sic] liver functions tests have never been more than mildly elevated’.
The blood specialist did not disclose the ‘markedly elevated’ test results from 1986.
‘He prevented the gastroenterologist from doing his job properly,’ Mr Stanley says.
Unlike in the UK, where the infection of more than 30,000 unsuspecting children and adults with hepatitis C and HIV caused national soul-searching leading to a compensation scheme, victims of Australia’s similar health system failure continue to be shunned. (Pictured: families affected by the infected blood scandal in the UK following the release of a landmark inquiry)
Mr Stanley, who worked as a law clerk for former South Australian Independent Senator Nick Xenophon, now devotes much of his time to campaigning for infected blood victims to get justice.
The infected blood and plasma came from blood donated in Australia as well as overseas that was turned into medical products by the Commonwealth Serum Laboratories, then owned by the federal government.
After operating for many years as an obscure facility that mainly produced snake bite anti-venom serums, the labs turned their focus to making blood and plasma-related products, laying the groundwork to become the biotech giant now known as CSL.
Following privatisation in 1994 by the Keating Labor government, CSL has grown to be Australia’s third-largest listed company, making a whopping $20billion profit last financial year.
CSL owns blood processing plants and plasma collection centres in the U.S., Germany, Switzerland, China and Britain, and is spending $900million on updating its Melbourne base of operations.
Mr Stanley believes such success came at a terrible price to himself and others.
‘They had the ability to eradicate hep C from the blood in 1985 and they chose not because of the loss of yield,’ Mr Stanley says.
‘Other countries had the blood products clear of Hep C in 1985.
‘Australia chose to use a 60C heat treatment method where they were losing 15 per cent yield rather than one that got rid of Hep C but caused a yield loss of 40 per cent.
‘By contrast other countries implemented an 80C heat treatment, which successfully eradicated both HIV and hepatitis C.
‘They just see human lives as a dollar sign.’
Friends and families of victims of the UK blood contamination demonstrate in Central London
Mr Stanley says CSL imported plasma from Southeast Asia to pool with blood donated in Australia and this greatly increased the risk of contaminating the whole batch with hepatitis B, C and HIV.
‘The long and short of it is they were terrible at donor selection, so they didn’t do enough to make sure their donors weren’t coming from a background that made them high risk,’ he explains.
‘They didn’t introduce surrogate testing (looking for AST and ALT proteins) when they should have, CSL didn’t heat-treat to a high enough temperature to eradicate Hep C.
‘Those three things combined have resulted in so many haemophiliacs being infected.’
In Parliament last month, Senator Malcolm Roberts asked National Blood Authority John Cahill if health authorities were aware there was hep C in Australian blood products in the 1980s.
He also asked if authorities knew the mass pooling of blood and plasma to produce Australian Factor VIII and IX had increased the risk of hep C contamination.
To both questions, Mr Cahill admitted there was awareness.
Senator Roberts said this was a ‘legacy hanging over the Australian government’.
However, Mr Cahill rejected the contention that Australia had failed to heat-treat blood products until 1993, despite other countries doing so from 1985.
‘There have been compensation arrangements put in place access for people affected by hep C to antivirals,’ Mr Cahill said.
‘The governments collectively across Australia have invested heavily in Australia’s blood supply.
‘As soon as the scientific evidence emerged about the risks associated with HIV the practices were changed.’
He also said there ‘were substantial differences between what occurred in the UK and what transpired in Australia’.
Mr Stanley explains the only compensation paid to Australia’s infected blood victims has been by the Red Cross – and that has been to a relatively few blood transfusion recipients.
At October’s CSL annual general meeting of shareholders in Melbourne’s RACV club building, Mr Stanley and other people affected by infected blood staged protest as people walked in.
Investor Chris Maxworthy, whose microphone was cut off during a 2023 Qantas AGM when he challenged the airline’s actions, took up the protest concerns inside with a question to CSL Chairman Brian McNamee that led to an awkward exchange.
‘We all walked past some protesters downstairs that I presume are affected by haemophilia and perhaps contaminated blood products some years ago,’ Mr Maxworthy said.
‘I’d just be curious about CSL is doing in relation to those people?’
Mr McNamee, who is brother to professional tennis player and influential sports administrator Paul McNamee, replied that ‘the ’70s and ’80s was a terrible time for the whole blood sector’.
‘Certainly I wasn’t there but it’s still a terrible thing to remind ourselves that every day we have to do things better, we have to ensure we put in place incredible checks and balances,’ he added.
‘The pain and suffering is terrible. I express my deep sympathies… The challenge is it is a long, long time ago.’
He explained that during the privatisation process of CSL, indemnities ‘were always given by the owners with regard to historical viral transmissions’
Mr McNamee claimed it was difficult to know what ‘they [the infected blood protesters] are asking of us but they have our deepest sympathy’.
But Mr Maxworthy was not done at the microphone.
He suggested CSL show leadership ‘to pull together the various governments [and] the Australian Blood Authority in order for us to find a way forward and… make this risk to our reputation go away.’
CSL Chairman Brian McNamee was challenged at an annual general shareholder’s meeting about what the biotech giant was doing to help those infected by blood and blood products
‘I hear your words of sympathy but I think action of some form where we take the lead and are seen not necessarily as the owners of the problem but the people investing in an outcome, I think that would be helpful,’ Mr Maxworthy said
‘Let’s hope the other parties…’ Mr McNamee began before Mr Maxworthy cut him off.
‘I think it’s up to us, we have the marketing and political influence and the ability to connect at senior levels to have an outcome that works for those in power and works for us in terms of reputation,’ Mr Maxworthy said.
‘I think it’s fine,’ a tight-lipped Mr McNamee replied.
‘Actions, I think, will help,’ Mr Maxworthy repeated but there was no further response from the podium.
Mr Stanley says Mr McNamee’s reply was not good enough.
‘From 1985, Australia had the ability to destroy hepatitis from its Factor VIII – the product that infected me and my brother – and Factor IX – the product that infected Tony David – but chose not to use that method because it reduced yield and increased costs,’ he tells me.
Mr Stanley says Mr McNamee ‘knows exactly what we want… We want the truth to be told and compensation.’
A spokesperson for CSL told Daily Mail Australia they ‘recognised’ the pain and suffering endured by patients and their families who were associated with infected blood in the 1970s and 80s and express our deepest sympathies to those affected.
‘At the time, Commonwealth Serum Laboratories was owned and operated by the Australian Government,’ the spokesperson said.
‘Today, there are multiple layers of safety and standard measures to prevent infections. These steps have ensured safe and effective plasma derived medicines for patients for decades.’
The Department of Health and Aged Care said the Senate inquiry found the most ‘effective way to assist those people who have acquired hepatitis C through blood and blood products is to improve access to services and education of medical personnel, and to support research efforts to develop more effective treatments for hepatitis C’.
It said the government has implemented a range of initiatives consistent with the Senate committee’s recommendations, including supporting the Australian Red Cross Lifeblood Lookback Program, which blood infections that may have been transmitted by transfusion.
‘The Australian Government also contributes to state and territory administered Hepatitis C Settlement Schemes, and has invested over $7 billion to provide subsidised access to curative direct acting antiviral medicines for all eligible Australians,’ the department said.
One expert who does think this is enough is Dr Richard Davis, an anaesthetist who was awarded a medical prize for his research into safe blood transfusions.
He was on a South Australian committee for transfusions, but whose advice was ignored throughout the 1970s and ’80s.
‘Australia’s infected blood and blood product transfusion disaster was Australia’s worst iatrogenic [relating to illness caused by medical examination or treatment] medical disaster,’ he tells me.
‘A royal commission into the catastrophe should’ve been held decades ago.’
Mr Stanley insists he is not motivated by money, but the ‘recognition this happened and what happened was wrong’ – ideally in the form of a royal commission.
He admits the stony silence from politicians and the media, as well as being pitted against the corporate might of CSL, can be discouraging but he is banding with other victims of infected blood and blood products to keep up the fight.
The historic inquiry in Britain has given them extra reasons to hope.
‘We are not going to stop. We won’t stop. We will keep pushing and pushing until there are no other options,’ he says.