Jryna gave evidence about her own infection with hepatitis C and that of her late husband, Donald. They married in 1982 and in 1987 Donald had an operation for his thumb where he was given blood plasma because of complications in surgery. Jyrna shared that she was a regular blood donor but in 1994 she received a letter from the blood service informing her she had hepatitis C and was not allowed to give blood anymore. Donald was then tested and found to also be positive for hepatitis C.
Jyrna said that they both started treatment for the hepatitis in 1995 which proved to be extremely difficult to manage especially as they had two small children at the time. Jyrna shared that the treatment seriously affected her; she became stressed and paranoid and broke down on occasion. She was advised she would not be able to go back to work and ended up taking early retirement in 1996. The side effects of the treatment were so intense for her that she had to stop treatment after a month. In solidarity Donald also stopped his treatment. From the time they stopped treatment until 2018 they were not followed up or monitored.
Donald became unwell in 2018 and on December 21st he went to an emergency GP clinic and he was found to have lesions on his liver. A week later he received results from the tests taken and was told that because of the amount of damage to his liver he had months to live. In the midst of Donald’s final illness, Jyrna started treatment for her own hepatitis C. She has recently discovered she has cleared the virus but she feels guilty that for Donald it was to late. Sadly, Donald passed away in July 2019 which has had a devastating effect on Jyrna and her family.
The next two witnesses were brothers, Miles and Paul, who spoke to the Inquiry about their experience of being treated with contaminated blood products during treatment for their moderate haemophilia B. There is no history of haemophilia in their family, both acquired it through a genetic mutation. Miles and Paul spoke about how they believe they were used as research subjects and Miles recalled how their doctor would refer to them as ‘pups’ which he thought was a term of endearment. However, he later found out that ‘pup’ was an acronym for previously uninfected patient. Medical records show a letter stating that both brothers were given pseudonyms by doctors, Miles said that he is concerned there may be medical records or studies filed under these pseudonyms.
Miles said that when he was around the age of 12 he was infected by hepatitis B which was very distressing for his parents who were not given any clear explanations – their questions were dismissed and answers were vague. Both Miles and Paul were told in 1993 that they had been infected with hepatitis C. They described their similar experiences with treatment in 1995 and notably the huge impact it had on their mental health. Miles was only able to stay on the treatment for 6 weeks. Paul managed to stay on the treatment for four months and was told after the treatment that he had been PCR negative in May, before he even started the treatment. Miles had further treatment in 2003 and was told after the treatment that he had cleared the virus but it is lying dormant. Both brothers shared that they remain concerned because they feel like they still have the virus and still suffer symptoms.
Paul ended his testimony stating that he wants answers as to why they were treated as guinea pigs and he pleaded for the Inquiry to deal with everything as quickly and efficiently as possible. Miles added that what happened never should have and the blame has never really been accepted by the government. Miles said he felt that they have been let down by the NHS and the government meant to serve us.
The last witnesses of the day were Mrs AU and her daughter Miss AV who shared with the Inquiry how they both became infected with hepatitis B by contaminated blood products. When Miss AV was 9 months old, she was given plasma as part of treatment after she suffered a serious accident. When Miss AV was four, she injured her head again when playing with friends. Mrs AU shared that not long after this she became unwell and turned bright orange. Blood tests then revealed she had hepatitis B. Her family were all then tested, and it was discovered that Miss AV also had hepatitis B.
Mrs AU spoke about how the local authority conducted an investigation and tested children at Miss AV’s nursery, staff and family members. Mrs AU recalls she later received a letter which said that the only conclusion they could reach is that Miss AV had been infected with hepatitis from the treatment she had as a baby. Mrs AU described the symptoms she suffered from hepatitis B, noting it was especially challenging as she had two small children. Luckily, she managed to clear the virus naturally. Miss AV described the various intense treatments she has received over the years and how devastating it was to not clear the virus despite the harsh rounds of treatment. Miss AV is currently on management treatment and will likely start a new trial treatment in the near future.
Miss AV told the Inquiry of the impact being infected with hepatitis B has had on her mental health. She shared that she was bullied in school and she said that it is a problem that the virus is not understood and viewed as an STD. Miss AV struggled in school and her relationship with her mother also suffered. However, when Miss AV was 22, she went back to college and is now in university. Miss AV and Mrs AU explained that they have not been able to apply for any financial assistance as hepatitis B is not covered by any of the schemes. Mrs AU said she hopes hepatitis B will be recognised as not just a sexually transmitted disease and treated equally in terms of support from the government as hepatitis C and HIV currently are.