Trevor and Louise spoke to the Inquiry about their experience of Trevor receiving contaminated blood products through treatment of Trevor’s Haemophilia B. Trevor’s primary care provider throughout his treatment was Dr Mayne at the Royal Victoria Hospital Belfast.
Trevor and Louise spoke of a group meeting held by Dr Mayne in 1985 with other haemophiliacs and their spouses where they were told all haemophiliacs were to be tested for HIV. Fortunately, Trevor’s test result was negative at this time. They were not made aware of any risk of Hepatitis. It was not until 1996 that Trevor learned that he had contracted Hepatitis C. However, medical records show antibodies present years before this time. Trevor was also told in 2004 that he was a recipient of an implicated batch of vCJD. Little practical help or assistance was offered, Trevor said he lives in fear that vCJD will resurface.
Louise told the Inquiry that she had married an ‘action man’ and explained in detail the huge impact Trevor’s Hepatitis C treatment had upon Trevor and their whole family. They explained the terrible side effects Trevor experienced from the treatment as well as the financial struggle they suffered.
Louise ended her statement describing to the Inquiry the challenges their family has faced receiving treatment as haemophiliacs in Northern Ireland. She noted the lack of effective protocol they have experienced when Trevor has required infusions of Factor IX in emergency situations. Louise also shared how it had been helpful for Trevor to have this opportunity to speak openly about these things they have bottled up, but it is unfortunate it has taken so long.
Mark, a sufferer of Von Willebrand’s disease, spoke to the Inquiry about how he, his brother and father had been infected with Hepatitis C through contaminated blood products. His brother and father have passed away as a result.
Mark shared with the Inquiry that he had not been informed that he had Hepatitis C until 2007. This only happened as a result of a retesting by his request after he discovered through looking at his medical records in 2006 apparent blood test results referring to Hepatitis C. From looking at his medical records Mark discovered that he had been infected with Hepatitis C in 1981 when he received Factor VIII instead of cryoprecipitate.
Mark explained to the Inquiry his concern that himself, his father and his brother had been used as research subjects, deliberately given blood products known to be more dangerous than others. The Inquiry was shown evidence supporting these beliefs in an academic research paper where Mark identified the patients who were himself, his brother and his father. Mark’s medical records also refer to him being part of a study. Mark stated that as far as he was aware no member of his family had consented to being part of any study and he feels his family were completely misled and lied to in order to facilitate their participation.
Mark shared that his treatment for Hepatitis C proved to be a devastating time for his family and he also suffered from severe depression. Mark told the Inquiry that when he sought treatment for his depression, he was told that he was delusional for believing that he was purposefully infected as part of an experiment.
Annette spoke about her husband Angus, brother of Mark Stewart. Like his brother, Angus suffered from Von Willebrand’s disease and was infected with hepatitis C from Factor VIII product. Annette shared her concern that Angus was used as a guinea pig and questioned why he was ever given Factor VIII in December 1980 as by this time is was clear that Factor VIII was contaminated.
Annette described to the Inquiry the deterioration of Angus’s health over the years, and the impact that the Hepatitis C had on their family such as their decision to not have children due to the potential risk.
Annette ended her statement asserting that she believes that Angus was a research subject and that clinicians knew that the patients would become infected with Hepatitis C. Annette stated that the Ministers, Department of Health and clinicians who continued to purchase and use contaminated blood products must be held accountable.
Jane, a campaigner and advisor in relation to disability rights, gave evidence to the Inquiry regarding her late husband Graham. Graham had severe haemophilia A, and as a result of receiving contaminated Factor VIII, he died of AIDS in 1993 at the age of 34. Jane shared how it was in 1987 that the severity of Graham being HIV positive was explained to him, around the same time that they got married.
Jane shared how Graham was started on AZT to treat the condition, yet this caused his health to deteriorate dramatically, with severe side effects. Jane explained how they couldn’t tell anybody of Graham’s illness because of the stigma. She described how Graham had to watch his brother die of AIDs, which was extremely hard for him as he was watching his future. Because of the stigma, Graham’s family told people his brother had died of cancer.
Jane emphasised in her statement the difficulty they faced both being severely disabled and the lack of support and care that was available to them. Jane also shared that she believed the widows of the infected haemophiliacs were not provided with the support they needed financially, or emotionally. Jane further explained to the Inquiry how she believes Haemophiliacs were not treated the way they deserved to be treated by the medical profession, with information purposely withheld from them.