Clair Walton, 57
Walton married her husband, Bryan, in 1983. He died a “terrible, horrendous” death 10 years later having passed the HIV virus on to her.
“We were young and newly married,” Walton recalled. “He was a retail manager and I worked as an archive conservator. We had good careers. We had just bought a house together and had our whole life ahead of us, hoping to have a family.
“He had haemophilia. We had heard a few snippets of information about Aids but the doctors said don’t worry about it. Even the Haemophilia Society said don’t worry about transfusions.
“Then in 1985, he was called in for a blood test and was told he had HIV, that it would become Aids, that he would die and there was no cure. There was no support.
“Then in 1987, I was discovered to be HIV positive – infected through sexual contact. I nursed him and he became seriously ill. We were isolated from society because at that time there was such stigma. He died a terrible and horrendous death in 1993. I never had children.”
Walton came to London and worked with a consortium of HIV charities. She works with a group called Positive Women. Of about 40 women first infected through sexual contact with their partners from the first cohort of those diagnosed by 1988, she believes 30 are now dead.
“We were wives who married haemophilia sufferers. As a young woman I was bullied by middle-aged men [doctors]. I would like the truth to come out. I would like to know whether any of this could have been avoided.”
Michelle Tolley, 53
Tolley received two blood transfusions in 1987 and 1991 after the birth of her children. She now carries the hepatitis C virus.
During the 1990s, she said, there was television coverage about viruses passed on through blood products. “I was already feeling severe fatigue. I went along to my GP. He said: ‘Well, of course you have fatigue. You have four young children. What do you expect?’
“When you are a young mother you trust a health professional. Apparently there were ‘look back’ checks after that to identify those who might have been infected. They can’t have looked very far.
“I was finally diagnosed with hepatitis C in November 2015. The worst thing was that my family had to be checked. What if I had passed the virus on to my children?
“These infections are like a ripple out through families. In some cases whole generations have been lost. Those responsible for this historic tragedy which has lasted decades must be identified. They must be held responsible and prosecuted if necessary.
“We have been given a death sentence without committing a crime. What was the cause of this bloody mess?
Jason Evans, 29
Evans was four years old when his father died. His only living memory of him is seeing him on his death bed and then attending his funeral.
His father, Jonathan, was diagnosed with haemophilia as a young child. He began using the clotting agent factor VIII to treat his bleeds in 1976. “He first tested positive for HIV in 1984,” Evans said. “He was not told about that, however, until the following year.
“He wasn’t told he had hepatitis C until the early 1990s, despite the fact that the chance of exposure through factor VIII was by then virtually 100%. He died in 1993, aged 31.”
He had been treated with blood products from the US. “A lot of those American companies had UK offices and staff and sales teams in England. So those people could be called to the inquiry.
“The drug companies have completely got away with this.” The firms’ current US managers should be called to explain what happened, Evans added.
“What was done to haemophiliacs in the 1970s was completely avoidable had action been taken sooner. There’s no reason why that could not have been done before – decades before.”
Evans said his father knew he would die young . “But I have lots of home videos … They knew he was dying so they took lots of pictures.”
Hirsch lost one of her twin sons, who had haemophilia. He was diagnosed aged three weeks in 1976 and died at 35 years old. He left a partner of 12 years and a 10-month-old baby.
Hirsch met her husband, Dan, in San Fransisco in the 1960s. She lives in Highgate, north London and is the elder sister of the Liberal Democrat peer Lynne Featherstone.
“Both medical professionals and the Department of Health were engaged in a complicity of silence and they did not call out their suspicions for many years,” Hirsch said. “This led to long delays in looking for safe alternative ways to find blood. That silence screwed us.
“We were made to feel as if we were to blame, we were treated like pariahs. That seemed like a standard procedure. The misery and appalling lack of care can never be overstated. I was appalled when I was dealing with [health officials] on behalf of my son’s family. They were chaotic. They looked at any financial assistance as charity. At this stage my son had only been dead for three weeks.
“This is our inquiry, where we can ask all the questions we weren’t allowed to get out of our mouths. We can finally hope that our inquiry will look into all of the Department of Health’s dark corners.”
Anthony Ferrugia, 46
Ferrugia’s father, who had haemophilia and needed blood transfusions, died in 1986.
“My father was one of three brothers. All were infected. My father had HIV, hepatitis B and hep C. One uncle was infected with Creutzfeldt-Jakob disease. All three died,” said Ferrugia, who is from St Neots in Cambridgeshire.
“My family were haemophiliacs. Some of my cousins have died. One developed cirrhosis of the liver from hepatitis C. It’s been 32 years burying our dead and we haven’t finished yet.
“My father had five sons. I was 14 when he died at the age of 37. I was placed in care and didn’t see the rest of my brothers for 26 years because we were all separated. All of the brothers didn’t meet again until 2010.
“We would like recognition and an admission of wrongdoing so that the public are aware of what’s happened. It’s been hidden away for far too long. We have been stigmatised with having HIV. People didn’t speak out. It has been covered up because of the scale of the disaster.”
Mark Ward, 49
Describing himself as a “severe haemophiliac”, Ward was diagnosed when he was three.
“From the first treatment the blood product was tainted and filthy. It was at Great Ormond Street hospital. They were saving my life because I used to have nosebleeds.
“But they were also infecting me with viruses. I had hepatitis A, B and C, HIV, Epstein-Barr virus and many others. I used to bleed all over my mother and they put her life at risk as well. I was told I had HIV in 1983 when I was 14. I have been living on borrowed time for many years.
“The nurses told my family when they were on a hospital visit. They shouted across the NHS waiting room: ‘Do you want to know Mark’s HIV results? He’s positive.’
“We want the truth to come out. We want the power of giant pharmaceutical companies over government to end. My life was deemed to be worth less than their profits. There were warnings about these blood products as early as 1958.”
Chris Smith, 40
Smith was eight when his father, a severe haemophiliac, died.
“He was contaminated in 1985 with HIV and hepatitis C and died the following year. They picked it up on a routine test and didn’t rush to tell him. He left myself, an 18-month-old child, and my mum.
“There was no one before him who had haemophilia in our family. It just appeared. I have also lost my cousin. No one wanted to be associated with HIV because of the stigma attached to it. There were families at the time who had ‘Aids scum’ spray painted on their homes. It was like a dirty secret.
“People used to say their father died in a car crash or had cancer rather than admit their father died of Aids.
“The majority of this suffering could have been avoided. If they had acted earlier people might have been left with hepatitis C, but no one needed to get HIV or Aids which came later.”
“There needs to be some sort of accountability. There’s been no blame in any way. What we would all like to see is the truth.”