Human patients were used for testing dangerous blood products which infected tens of thousands of people.
Documents discovered by infected blood campaigners show how medical experts compared haemophiliac patients to laboratory chimpanzees.
More than 30,000 people across Britain were infected with hepatitis and HIV after being injected with ‘dangerous’ blood products in the 1970s and 1980s.
It is now known as the infected blood scandal.
For those with haemophilia, injections were given under the disguise of treatment – and without consent.
But the blood plasma, known as Factor VIII, was sold by pharmaceutical companies, mixed from tens of thousands of paid donors in the US, including prisoners.
After years of campaigning by victims and those who lost loved ones, the scandal was exposed, leading to an inquiry led by Sir Brian Langstaff that is due to conclude next Monday.
It is thought the report will reveal that the haemophilia community was ‘expendable’ when they were given a contaminated blood product, a charity has said.
A ‘horrifying’ number of people with haemophilia suffered harm as a result of the infected blood scandal, the Haemophilia Society said.
The inquiry has heard harrowing testimonies from people who were infected as children or young adults.
Many of the infected have died prematurely and others became seriously ill since they were infected.
It is thought almost 3,000 infected people have died.
And campaigners fear many more will continue to die before any compensation is paid.
Kate Burt, chief executive of the Haemophilia Society, said that people in the haemophilia community hope the ‘truth will finally come out’ when the report is published.
She described the publication of the report as a ‘significant milestone’ for people with the blood disorder, but said that for many the scandal ‘will never end’.
Now the campaign group Factor 8 has also discovered historical documents showing government-funded agencies proposing to swap chimpanzees in medical research for haemophiliacs.
It was despite studies that showed hepatitis transmission to chimps that were given Factor VIII blood.
Victims of the scandal shared their harrowing accounts of family breakdown and trauma after infection from dangerous blood products.
Here is what the documents revealed.
In 1983, a Scottish Blood Transfusion Service meeting said: ‘Even if chimpanzee studies were satisfactorily completed, studies in high risk patients, e.g. haemophiliacs, should still be carried out. We might wish to consider this as an alternative to chimpanzee studies.’
It came after years of similar discussions by government-funded agencies like the Medical Research Council.
A letter from a February 1970 meeting of the council said Factor products ‘have been found to transmit this form of hepatitis to chimpanzees.’
The letter goes on to say that the virus could be seen in the livers of infected chimps but said they were ‘a clumsy experimental animal.’
Another Medical Research Council paper a week later included a statement by Professor Sherlock, revealing many of the blood products from the US from ‘professional donors’ carried a ‘high risk of transmitting’ hepatitis C.
Professor Arie Zuckerman wanted to conduct more hepatitis experiments on chimps, but the animals were ‘expensive, their supply was limited, and maintenance costs were high,’ a paper studying the transmission of hepatitis to chimpanzees said.
In 1981, a paper in the Journal of Infectious Diseases showed chimps were infected with hepatitis C after being injected with Factor VIII products.
One pharmaceutical company that made Factor was studying how many patients were infected with hepatitis through a non-heated version.
An MRC spokesperson told Metro.co.uk in a statement it has ‘supported the work of the Infected Blood Inquiry since 2018,’ including contributing to its investigation.
Professor Marc Turner, director of the Scottish National Blood Transfusion Service, said it acknowledges that the language used in the 1983 document was ‘unacceptable,’ adding that blood services have changed ‘a great deal’ since then, including more stringent donor selection.
Jason Evans, founder of Factor 8 group and whose dad died after he was infected with HIV and hepatitis from Factor VIII blood, said it was ‘scandalous’ to see how the medical profession and companies knew of the ‘dangerous’ products.
He said: ‘Then to instead use these products in people rather than animals.
‘It’s crazy – crazy even if people would have given consent.
‘What makes this totally scandalous is people did not give consent. And as a result people’s lives were ruined, or ruined and will be taken in the future.’
Some of the victims have mustered up the courage to speak out publicly only now due to stigma and shame – more than 40 years after becoming infected.
Roger Newman, 56, from Kent, was infected with hepatitis A and B between the ages of eight and ten after receiving infected Factor VIII blood products under the disguise of treatment for haemophilia – without consent or any conversations with doctors.
Out of the severe haemophiliacs infected, Roger is one of only around 20% who is still alive, he told Metro.co.uk.
He said how he has carried the ‘fear and embarrassment’ with him since the playground as he was warned not to share any cups or cutlery with others.
‘I felt I was living with a sense of shame from such a young age.’
But his ‘world collapsed’ at 15, when his mum told both him and his brother, who also had severe haemophilia, were diagnosed with HIV.
When the infamous AIDS public health campaign appeared on TV, haemophilia began to be associated with HIV, making Roger ‘ashamed’ to tell people he was a haemophiliac.
‘My mum had to live with two sons with potentially a death sentence. We were both told we have two years to live at 16,’ he said.
When being treated at a hospital as a teen, he was shut into a separate room with stickers warning of ‘high risk of contamination.’
‘You felt like a modern-day leper.’
Roger told of the ‘shame and panic’ and ‘powerlessness because of the stigma’ that has ‘always been hanging over me.’
The brothers grew up in a ‘very devout’ Christian home.
The first time he heard of HIV and AIDS it was often called the ‘gay plague’ and from America, along with talk of prisoners and sex workers carrying the disease and sensationalist warning campaigns blasted in the media.
‘Really up until the last few years, with the inquiry and meeting with haemophiliacs, I am getting more courage to speak more openly.
‘But it did always feel like a dirty secret. If I meet new people, I have always felt I have to cover it up, live a double life. I’m a very open person generally.’
Roger ended up becoming a psychotherapist, working with people with trauma and shame. He said his own experience has helped him to ‘understand it more.’
The infection he got from the nefarious blood products as a child continues to have a real impact on him to this very day and excluding him from aspects of life many take for granted.
‘I have always struggled with long term plans because not knowing how long you are going to live.’
Because of an ‘immense’ amount of hospital appointments, Roger can only work part-time, and he has never been able to get life insurance.
Roger said him and his brother were infected at St Thomas’ Hospital in London with Factor VIII products, with repeated infections almost twice a month.
The concentrate they were given was sometimes made by mixing the plasma of 10,000 people – despite WHO guidance from the 1940s and 1950s advising against mixing plasma from more than ten people.
All because of ‘greedy pharmaceutical companies’ who should be ‘held accountable’ for their ‘negligence,’ he said.
He said he felt ‘sick’ and ‘disgusted’ to know now that the UK government ‘knowingly bought products that were higher risk in hepatitis’ because it was ‘cheaper.’
Doctors and medical departments received cash payments and ‘lavish trips’ for ordering commercial blood products from the US, Roger said.
He spoke of the survivors’ guilt as scores of those similarly infected have died.
He said he wanted the inquiry to bring ‘truth and justice’ and compensation for victims and for those who lost loved ones ‘for all the misery and suffering.’
St Thomas Hospital declined to comment ahead of the inquiry’s report.
Angela Newcombe, 75, from Corrington, North Devon, lost her son Neil Hilliard to AIDS at the age of 22 after he was infected with dangerous blood products.
Neil attended Treloar when he was nine-years-old where he was given blood concentrates due to being a haemophiliac.
Angela said Neil was infected in 1983, but the parents were not told about his infection until five years later.
She said: ‘It was total disbelief. We were told not to say anything. We were living with stigma back then.’
Angela witnessed how Neil’s health ‘slowly went downhill’ as he lost his hair, mobility and he struggled to swallow because of mouth ulcers caused by hepatitis C which he was also infected with earlier.
He grew paranoid, lived off liquids and had to wear incontinence pads near the end of his life.
‘It was tough. Nothing we could do as parents.’
Neil saw his schoolfriends from Treloar die and ‘he knew it was coming for him.’
122 pupils from Treloar were infected and 75 of the boys are now dead, Angela said.
‘Few survive and they suffer terribly with the survivours’ guilt.
‘The boys were used as guinea pigs, there were clinical trials going on. The boys were not consulted and we were not asked for the consent, the boys certainly were not.’
Angela told how health officials tried to hide the seriousness of the infection.
Even when they were told of an infection, no one told the parents ‘it was a death warrant.’
‘Then they started to conceal and shredding paper.
‘Never in your wildest dreams would you imagine you would get an illness,’ Angela, who works as a team leader in residential care, said.
Despite having HIV that developed into AIDS, Neil’s death certificate said the reason for death was chronic hepatitis C and haemophilia.
She said she think they were trying to ‘hold it back so it would not get into the knowledge of the general public and record how many deaths there were from it.’
She said Neil would have ‘loved to be here.’
Angela’s family was deeply affected by Neil’s traumatic death.
Neil tried to commit suicide once and he was targeted in a local park by youths.
His brother had to ‘go through with it as well,’ and he is still ‘very angry’ for losing his brother.
‘It broke our marriage up. We blamed each other.’
Angela, now a grandmother of two girls, said she hoped the inquiry brings ‘justice and peace’ after years of waiting for some acknowledgement of what happened.
Treloar school said in a statement that the ‘national scandal has devastated countless lives, including those of our former students and their families.’
It said setting up the public inquiry was right and that it has been ‘part of that process,’ adding that it fully supports the victims’ and families’ ‘calls for the government to accelerate compensation payments.’
It added: ‘Students and their families placed their trust in the doctors and medical professionals who provided treatment in the 1970s and 80s.
‘It has been shocking to discover, through the ongoing public inquiry, that some of our students may have received treatment which was unsafe or experimental.’
Rebecca Pagliaro, 38, from Waterlooville, Hampshire, was just 10-years-old when her father Neil King died after contracting hepatitis C and HIV from infected blood products given to him at the Treloar school.
Lord Mayor’s Treloar College was a boarding school for children with disabilities with a specialist NHS-run haemophilia centre on-site.
His dad was considered a haemophiliac ‘virgin’ known as PUPs in the medical world, meaning those who had never been given any blood products for their condition before.
It meant he could not have received it ‘any other way.’
Neil was told he had HIV unceremoniously via post in 1985, at which point he had had it for ‘a couple of years.’
Rebecca’s mum was pregnant with her, and what was meant to be a happy time for the young family became marred with fear over a potential infection for the mum and baby.
Neither were infected, but the family decided to move from their first home on a housing estate before anyone found out about Neil’s infection.
She told Metro.co.uk: ‘My dad was reading awful things about people he went to school with, AIDS scum and things like that. They knew it was infecting hemophiliacs. He did not want anyone to know he had it.’
They moved to a ‘really rural’ spot on a single-track road with no street lights as they were ‘just afraid of people,’ she said.
The scandal has had tragic impact on every aspect of Rebecca’s and her family’s life.
‘Family breakdown,’ she described the long-term consequences of the infection and the untimely death of her dad at the age of 38.
‘The main thing that I think is not appreciated is the infection was terrible. But also the illness itself and what that did to my dad.
‘He lost everything, his friends, his job, sanity. I really mean that. He was mad at stages. And scary. And he was not a scary person. He was deeply mentally unwell. And he just gave up hope.
‘Even when he was dying no one wanted to help him.’
Neil was given a ‘couple of paracetamols’ when he was dying in an isolation ward.
‘We were not allowed to go in and say goodbye to him. All dignity was gone. He had nothing. It’s disgusting. You would not treat animal that way.’
Because Neil was ill and his immune system weak, he picked up different cancers and his ‘mental health started to suffer.’
‘I don’t have any good memories to be honest,’ she said.
Neil struggled with suicidal ideations and he went missing ‘quite a few times, including from respite care that was mainly aimed at gay men who had HIV at the time. Only male partners were allowed to stay there while Neil’s wife was not.
‘He did not feel comfortable there,’ said Rebecca, who identifies as a queer woman.
Rebecca found out only after he passed what happened and why he died.
‘My mum was very clear I was not to tell anybody. She was right to do that.
‘I have met other people, the kids, who have gone through this, and they were ostracised because of this – because of stigma and bullying.
‘But it is a very hard thing not to be able to fully share. My line was that he died of cancer.’
She eventually started to tell people about what happened in her 20s, but she still remembers the fearmongering ads.
‘People are still afraid of HIV, people are still scared of it. I remember the ads, the tombstones with “don’t die of ignorance”.’
Her mum ‘struggled an awful lot’ but she also ‘did amazing’ despite the difficult situation.
‘I can’t imagine being in that position. Also because of the financial implications. He could not get life insurance because of his illness. His retirement was not very much.’
Rebecca lost all contact with her dad’s side of the family due to ‘stigma and shame’ and ‘some guilt because they sent him to the school.’
‘I don’t have any connection to my dad.’
She said living with the secret is ‘terrible for your health.’
Thanks to social media, Rebecca was finally able to connect with others who were affected. It eventually dawned on her what happened to her dad was ‘not a terrible accident.’
Rebecca, who works in HR, said she feels differently about compensation now compared to the early days of the inquiry in 2019.
She said: ‘When the inquiry started I was not sure I deserved compensation, but the more I find out how preventable it was and there was an ulterior motive for testing and this has rippled into my life.
‘I don’t know where I come from, I don’t know my medical history, my health has been very poor and I would say that’s due to trauma and my mental health has been incredibly poor.
‘Money is not going to fix anything and hold the people to account, but there is no other way in society how we fix things. To receive compensation for me would be validating. The money is a weird thing, it’s tricky, it’s uncomfortable.’
Rebecca criticised the government for sitting on Sir Brian’s initial recommendations for more than year, asking how Rishi Sunak ‘sleeps at night’ amid the ‘excuses’ and ‘lip service.’
Hearing that haemophiliac boys like her dad were used because they were ‘cheaper than chimps’ is ‘too painful,’ she said.
‘They were seen as less than that. It’s still going on how disabled people are viewed and that does play into it.’
‘It was a gut punch. That’s my dad. That’s my dad who missed out on my whole life, because his life was not valued.
‘Thatcher said at the time good Christian people do not get HIV.’
A government spokesperson said: ‘This was an appalling tragedy that never should have happened.
‘We are clear that justice needs to be done and swiftly, which is why we have acted in amending the Victims and Prisoners Bill.
‘This includes establishing a new body to deliver an Infected Blood Compensation Scheme, confirming the government will make the required regulations for it within three months of Royal Assent, and that it will have all the funding needed to deliver compensation once they have identified the victims and assessed claims.
‘In addition, we have included a statutory duty to provide additional interim payments to the estates of deceased infected people.
‘We will continue to listen carefully to the community as we address this dreadful scandal.’
Kate Burt, CEO of the Haemophiliac Society added : ‘Nothing finishes on May 20, it is just a major and significant milestone that we hope will expose the truth of what happened.’
She added: ‘We feel that if this had been properly investigated 30 years ago, then maybe other health scandals might have been avoided.
‘But that’s the huge fear is that, ‘could this happen again’? Yes, it could.’
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