Infected Blood Inquiry: “We need justice, we need someone to say we are sorry”
Stefania Di Cio`
- Credit: Archant
A victim of the infected blood scandal, where thousands of people contracted HIV and/or hepatitis from infected blood products, has spoken about her family's tragic experience at an inquiry.
The inquiry is investigating how thousands of men, women and children became unwell from infected blood products, mostly purchased from US pharma companies, during the 1970s and 1980s.
Faye, 53, who lives in Enfield, lost her husband, John, five years ago after he contracted Hepatitis C following treatment for thalassaemia.
She is one of the many victims participating in the Infected Blood Inquiry.
In 2017, a week after John died, Faye was with her family, grieving her loss, when the BBC Panorama documentary about the infected blood scandal came on TV.
“That was the first time I had actually heard that he had been infected through the way that he was. John passed away the week before from liver cancer due to the hepatitis and that was just so traumatising because I thought he deserved to know this,” Faye said.
She did not know the scale of the issue and decided to get involved and wrote a 21 pages “nerve wracking” statement for the inquiry about the 25 years with her partner.
“It has been quite traumatising: you have to relive it all.”
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John had thalassaemia, an inherited condition that affects the production of haemoglobin, used by red blood cells to carry oxygen around the body. In the most severe form, like in John’s case, people need regular blood transfusions.
“When John was growing up there was a lot of stigma towards thalassaemia, be it playing with other children, relationships, schooling or jobs and he didn’t like it. This made him feel that people didn't need to know about his thalassaemia in order not to be judged or neglected.
“There wasn’t anything he couldn’t do. As long as he had his blood transfusion he was just as good as new again,” Faye commented.
John was treated at the North Middlesex Hospital in the eighties for his thalassaemia. Problems came after he was diagnosed with Hep C in 1991 and he was then referred to the Royal Free and the Whittington Hospitals.
"There was no support for me over the years, the only support I had was John’s Haematology consultant at the hospital. I would email her all the time. She was very supportive and very caring of her patients and their families.”
The treatment for Hep C - which at the time consisted of interferons injections - was horrendous.
"John's life was completely turned around by hepatitis C. In fact it destroyed him, he was in constant pain, feeling sick, extremely lethargic, very depressed and there was another dreadful side that came with the Interferon treatment: he developed osteoporosis.
"Mental health wise, he was extremely bad, he was suffering, he was depressed all the time. It brought an aggressive side out of him. He lost his confidence, didn't want to socialise. There were times he was suicidal.”
John ended up with cirrhosis and liver cancer and although he had a surgery in 2016 at the Royal Free, he died a year later. Their daughter was only 20.
“Many times I felt cheated out of my life, and my relationship, all because my husband would have been completely different had he not been infected by this contaminated blood.”
Few people infected after treatment for thalassaemia have come forward to the Inquiry and Faye is pledging more people to do so.
“We need justice, we need someone to say ‘we are sorry, this is what happened and this is the reason why we did it.’
“But they also need to compensate people,” Faye said.
John was “medically retired” in his early 30s.
“There are people who have been infected and don’t know. If people had a transfusion in the 70s or 80s or even early 90s, they need to go and get tested.
“For the people to get justice, they need to know and come forward and speak.”