Stuart spoke to the Inquiry about how he was infected with Hepatitis C as a result of contaminated Factor VIII products in 1978. Stuart explained that it took years for doctors to correctly diagnose him with Ehlers-Danlos syndrome and as a result he was treated in 1978 on one occasion with plasma, cryoprecipitate and Factor VIII products as doctors thought he may have a blood clotting condition.
Stuart shared his experiences with doctors over the years, highlighting the poor communication he has had and the lack of trust he had been left with. Although doctors were aware of his treatment with Factor VIII products and problems with jaundice, Stuart was not tested and told that he had Hepatitis C until 2013, 35 years after the treatment that had infected him. He also highlighted the fact his doctor chose not to tell him of his risk of exposure to vCJD because she thought he was in a bad mental state. Stuart had said he found it difficult to comprehend that he had been infected with hepatitis C because he was given treatment that he did not need for a condition he did not have. He explained how this caused him to spiral into depression and he would not have been able to cope without the support of his family.
Stuart spoke about how victims of contaminated blood have been ignored by successive Prime Ministers as the government have continued to cover it up and mislead the public. Stuart stated the victims will not stop telling the world what the Government and the NHS have done until there is justice. Stuart said he wants the truth about why doctors did what they did to him to be exposed. He believes he was deliberately infected. It is clear to Stuart that he was mistreated and misdiagnosed because of the arrogance of the Doctors treating him. Stuart shared that he wants these doctors to be investigated and he wants the Government’s role in the scandal to be exposed.
Mark and his partner Richard spoke to the Inquiry of their experience with contaminated blood products. Mark was given Factor VIII products as treatment for his severe haemophilia A as a child and as a result was infected with HIV as a teenager in 1984. Years later in the early 1990s he found out he also had hepatitis C which he was told to not worry about because he would die from AIDS.
Mark shared the internal struggle he had, hating himself for being gay as AIDS was seen as the gay plague and the infection of the haemophilia community regarded to be the fault of gay men. In 1995 Mark also discovered he had been infected with CMV, he was so unwell at this point he thought he only had days to live. Mark spoke about the various treatments he has had to endure over the years including having to have all his teeth removed. He also had to medically retire from his dream job as he became so unwell.
Mark also told the Inquiry of the lack of information he was given by medical professionals, noting in particular how it was only in 2007 that he learnt he had naturally cleared hepatitis C event though there was a negative test on record in 2005. Mark met his partner Richard in 2003, and Richard spoke to the Inquiry of how Mark’s ill health has impacted upon him. Richard and Mark both explained the stigma they have experienced as a same-sex couple from medical professionals and in seeking financial assistance. Mark admitted that in order for the MacFarlane Trust to agree to officially recognise Richard as his partner, he had to threaten legal action.
The last witness of the day was Andri, who spoke to the Inquiry about her late husband Mario. Andri told the Inquiry her relationship with Mario began in 1993 and as far as she is aware, he was told he had been infected with Hepatitis C from contaminated blood products through treatment for his Beta Thalassemia Major in 1991.
Mario had 12 years on and off of Interferon treatment for hepatitis C until he eventually cleared the virus in 2004. Andri spoke in detail of the horrific side effects and depression Mario suffered through during his treatment. It left him so unable to cope that he was forced to medically retire from work. Although at the time retirement was a necessary choice, that too impacted upon Mario, causing him to feel isolated. Andri further described the impact Mario’s hepatitis C treatment had on their family and especially their young daughter who was reluctant to go to school during this time.
Andri stated that it seemed the 12 years of brutal treatment was pointless as although Mario eventually cleared the virus, he had cirrhosis of the liver and was diagnosed with liver cancer causing him to have an operation in 2016. The operation was successful, however, the cancer did eventually return. It was then that Mario was told he had 6 months to live. Andri said that she believes being told this is what truly destroyed Mario, he gave up and passed away three weeks later.
Andri shared with the Inquiry the devastating impact her husband’s death had on her, her daughter and Mario’s whole family. She spoke about the depression she suffered following Mario’s death leaving her unable to work. She also told the Inquiry of the difficulty she has had in attempting to receive funding from the EIBSS, particularly for counselling for her daughter who struggled after her father’s death.