St Neots man Tony Farrugia will give evidence to the Infected Blood Inquiry in London tomorrow (Friday).
- Credit: Archant
Mr Farrugia, 47, is listed as one of the core participants in the government-led inquiry, which is looking into why almost 3,000 people, including a man from St Neots, died after receiving contaminated blood products.
The inquiry reopened last week and has started hearing evidence from some of those who were infected with HIV and hepatitis C and also family members of those who have since died.
This included the mother of a 10-year-old boy who contracted HIV from blood products used to treat his haemophilia in the 1980s.
Some 4,670 people have been diagnosed with hepatitis C, while around 1,200 also contracted HIV after receiving blood plasma medication, which it transpired had originated from blood donations from prisoners, drug addicts and prostitutes in the US and then sold to pharmaceutical companies.
Mr Farrugia's father Barry, who was a haemophiliac, received only small amounts of blood plasma medication to treat a mild form of haemophilia, but was infected with the HIV virus and died from Aids in September 1986.
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Mr Farrugia, who was just 14-years-old when his father died, and his twin brother David, were placed in care as their father was the main carer in the family.
They were placed in separate care homes and did not see each other for 26 years.
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Over the next few years, two of his uncles, who also had haemophilia and had received infected blood products, died and one of his cousins is currently living with hepatitis C.
He describes the heart-wrenching circumstances of his father's death from the point of view of a confused and frightened teenage boy.
"At the time I was frightened, and you have to remember the huge stigma around HIV and Aids during the 1970s and 80s.
"When kids at school made jokes about Aids, I joined in rather than admit that's what my dad had died from.
"I remember going to see him in hospital not long before he died and he was very skinny and he had a mouth full of ulcers.
"The medical notes show he was very confused before he died and was sectioned at one point but they also document that he was constantly asking medical staff about his prognosis. One of the last entries shows a nurse had written 'Mr Farrugia did not ask about his prognosis today.'"
Mr Farrugia has his father's medical records and has discovered that he was infected with hepatitis B in the late 1970s and with HIV early in 1980, but it was two years before anyone told him he had the virus.
"One of the hardest things now is that this wasn't a life-saving drug for my dad as he had a mild form of haemophilia and it could have been managed without the drugs.
"I remember being told it was a dreadful accident. It wasn't until the advent of the internet that people started to make connections and realise the full extent of the infected blood tragedy.
"There is a long, tangled and shameful history here and the public have the right to know the facts."
Mr Farrugia says he has confidence in the inquiry, being led by Sir Brian Wagstaff, and believes it will lift the lid on the true extent of what has been described as "the worst treatment scandal in the history of the NHS".
"But," he says, "there is a lot worse to come."
"We are only now seeing some of the documentation that will show what was known, not only about the contaminated blood products, but also about the HIV virus, and importantly, when people knew," said Mr Farrugia.
"We believe the pharmaceutical companies put profits first, but the key thing is not just what they knew, but when.
"We believe people must be held to account. Whatever they claim now, they peddled products of death and then tried to sweep it under the carpet. We have been severely let down. Many of the victims and their families lived in poverty due to the fact that the main bread winner was seriously ill or had died.
"We are all still being kicked in the teeth by those in power and that is deeply hurtful. Eight children in our family lost a dad and there are two widows. My brother and I were spilt up in 1986 and not reunited until 2012.
"It is shameful and we and all the other families involved deserve the truth."