Three men in the same Camden family were infected with contaminated blood, the only survivor told inquiry: 'We were used as test subjects'
PUBLISHED: 07:00 17 October 2019
Three members of the same family who contracted deadly hepatitis C from contaminated blood products at the Royal Free were being used as unwitting test subjects in clinical research, the sole survivor believes.
Mark Stewart, 50, was giving evidence at the Infected Blood Inquiry in the City. Treatment for haemophilia using what are now known to be toxic products led to both his father and brother dying from hep C - and he, like many, believes there was a cover-up.
Angus Stewart senior, Mark's father, died after his hep C led to liver cancer in 2002. Angus junior, Mark's brother, died 11 years later aged just 48 after complications from hep C also led to lung cancer which spread throughout his body.
All three were treated at the Royal Free. Mark and Annette are both of the "firm belief" that the three men were being used in clinical research as "previously untreated patients" - also known as "virgin haemophiliacs" - to investigate blood-borne infections.
Mark said it was his "firm conviction" that the dates he, his father and brother were first given Factor VIII blood products correlate with the dates recorded for three patients in a research paper produced by Dr Peter Kernoff, Dr Howard Thomas and Dr Christine Lee in 1985.
Due to a lack of stock in the UK, blood products were pooled and concentrated from thousands of donors both domestically and overseas. The lack of screening and heat treatment, and the fact people in the US were paid for donations regardless of their risk of having blood-borne infections, led to the product becoming contaminated with viruses including hep C and HIV.
Looking through his own medical records after discovering he had hepatitis in 2006, Mark traced his infection to the only batch of blood factor products he was ever treated with, as an 11-year-old in May 1981. Of his eventual diagnosis, Mark said: "I was smashed, devastated. I was gobsmacked. I became very overwhelmed and depressed."
Asked whether he or his parents were made aware of any risks of blood factor treatment, or whether he was told that his liver function would be tested afterwards, Mark replied: "No." He added: "I should have been given cryo-precipitate [an alternative to the blood factor product] - the concentrate carried the risk of hepatitis. They knew that and they still gave it to me.
"I feel that my parents and I were deliberately lied to in order to facilitate my unwitting participation in illegal clinical research."
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Meanwhile, Annette told the inquiry: "Angus was given Factor VIII in December 1980. Even back then, it was very very clear that Factor VIII was contaminated."
Annette referenced an interview, revealed in this newspaper last year, that Prof Lee gave to the Royal College of Physician's Oral History Project in 2015. Annette recalled: "They knew that when giving patients Factor VIII, 100 per cent were given hep C."
Struggles with his mental health eventually led Mark to move out of the family home he shared with partner Francesca and three children, and Mark took part in a number of years of therapy. However, after one session in 2015, he was told he had "depression and delusional disorder" because of his belief in a cover-up of the contaminated blood scandal.
In a letter, Mark's therapist - based at Camden and Islington NHS Trust's now-sold "The Hoo" site in Hampstead - wrote: "He has a choice about whether to keep fighting for the contaminated blood cause or to try and think about the things in life that are important to him and rebuild a life worth living."
Mark was horrified by this. He said: "You open up and then you find out they don't believe you."
Annette also said she was concerned at the timing of both Angus and his father being changed from cryo-precipitate to Factor VIII for identical stated reasons - a reaction.
"I would like to know why he was all of a sudden given Factor VIII," she said. "To me, there's a reason behind it: to be part of some sort of medical investigation. Angus was given a product in 1980 already deemed unsafe."
In response to Mark's evidence, Prof Edward Tuddenham, a former co-director of the Royal Free's Haemophilia Unit told the inquiry in a statement: "As far as I am aware, it was not the case that any clinician at the Royal Free Hospital deliberately gave a patient blood products which they knew to be more dangerous than other products."
Although he said clinicians were aware of a "small risk" of blood borne infection from blood products, the professor said it had always been necessary to "balance the risks against the benefits of prescribing a particular blood product".