Martin’s late father infected with hepatitis C from a blood transfusion in 1991. The transfusion was given as part of ordinary practice for a knee replacement surgery. Martin’s father had a further two knee replacement surgeries after 1991 but did not receive transfusions on these occasions as the practice of transfusions for such surgeries had ceased shortly after his first operation. In 1995 Martin’s father received a letter from the National Blood Service as part of a look-back exercise informing him that the blood he had been given may have been carrying hepatitis C. After receiving this letter Martin’s father tested positive for hepatitis C. Martin explained that this haunted his father for life, and he would always be extremely wary about blood spillages.
Martin shared that his father struggled with the stigma associated with hepatitis C and feared that he would be associated with other causes of the virus. These fears seemed to be well-founded as shown in his medical records where doctors made queries of drug use. Furthermore, on one occasion a doctor told Martin’s father he had hepatitis because of his ‘misspent youth’, this was extremely difficult for him to hear. Martin’s father also struggled with having to keep his diagnosis a secret from most people because of the stigma.
Martin’s father suffered terrible side effects from the various courses of treatments he endured over the years to clear the virus. Although he did eventually clear the virus in 2015, his liver was cirrhotic. In 2016 his liver was decompensating again, and he had a knee operation which led to kidney failure during the operation. He was then moved to another hospital for a possible liver transplant. He then suffered an internal bleed from a further procedure, and he passed away in July 2016. Martin emphasised that he believed there was a lack of understanding and joined up thinking throughout his father’s treatment. He felt the doctors had little understanding of hepatitis C and the weakness of his liver leading to the traumatic death of his father.
Carol gave her evidence about her late husband Ollie, who she met in 2003 and married in 2011. Ollie became infected with hepatitis C from contaminated Factor IX product. Carol explained that Ollie suffered from haemophilia B but in reality, he rarely bled and required little treatment. Ollie was given Factor IX prophylactically in 1977 and 1980 for dental extractions. When he was living in America in 1982 and had a dental extraction, he was told that having blood products prophylactically had a risk of infection and they therefore removed the tooth without treatment, having the factor product on standby in case of a bleed. When Ollie needed another tooth extraction in 1989 and was living back in the UK, he explained that because of what he had been told in America he did not want prophylactic treatment. Despite this request It was given to him for the 1989 extraction. Ollie trusted that his doctors would not knowingly put him at risk and accepted the treatment.
Later that year Ollie became unwell and tested positive for hepatitis C. As he had not received treatment in over 10 years before the 1989 extraction, Ollie was sure that was the occasion he contracted the virus. Ollie was told very little about hepatitis, it was when he started doing his own research and started to talk to action groups that he became more informed. Ollie suffered severely from side effects from the treatments he had to attempt to clear the virus. Following treatment of Pegylated Interferon in 2005, Ollie suffered problems with his lungs and was found to have drug induced pulmonary fibrosis. In 2007 he was also diagnosed with bowel cancer which was cleared after an operation. Carol is unsure whether the cancer was connected to the hepatitis but believes it is a possibility.
In 2012 Ollie became seriously unwell again with lung problems. Ollie was found to have lung cancer and he passed away shortly after. Carol understood that hepatitis C could cause pulmonary fibrosis and Interferon could induce it, so she asked for hepatitis C to be put on the death certificate. She also wanted a post-mortem but doctors believed this was just because she wanted to be able to make a claim for compensation. In reality, Carol wanted answers that could help others in the future.
Mrs AT spoke to the Inquiry about her late husband, who was born in 1935 and suffered from severe haemophilia A. Mrs AT told the inquiry that her husband’s treatment in Cardiff under Professor Bloom was changed to Factor VIII concentrate in 1975. A year later, blood tests showed he had contracted hepatitis B although the hepatitis B did not cause him to have any particular symptoms or problems.
Mrs AT shared that her husband became aware of media reports and information about the risk of AIDs in the early 1980s and he raised it himself with his doctors in January 1983. At this time, it seemed to be credited by the doctors as a reasonable possibility which was proven to be true when he was told in 1984 that he had tested positive for HIV. Mrs AT described the mental effect the diagnosis had on her husband and described it like having a sort of plague in the house. She also described the physical effects that HIV had as well as the various treatments and side effects he experienced from HIV medication over the years.
Mrs AT’s husband also tested positive for hepatitis C but was PCR negative and did not experience symptoms that Mrs AT was aware of apart from tiredness. He also did not qualify for an ex gratia payment for the hepatitis as he was PCR negative and did not require treatment. Around 2004 her husband was also notified that he had possibly been exposed to vCJD. Mrs AT shared that because of her husband’s poor health he had to retire early.
Mrs AT’s husband passed away after a stroke in 2012. Based on information she had received from doctors, the medication he received for HIV may have been a contributing factor. Mrs AT described her husband as an extraordinary man and shared how difficult his passing was for her and her family.
Mike gave his evidence to the inquiry about how he was co-infected with hepatitis C and HIV from contaminated blood products. Mike was diagnosed with severe haemophilia A in 1965 when he was around 6 or 7. In late 1981 he was put on home treatment with Factor VIII and from that point onwards, he received only factor treatment. At the time the factor treatment improved his quality of life and he was not given advice or information about risks or infection.
In 1985 when his wife Yvonne was pregnant with their first child Mike was called to a meeting with his doctor and told he was HIV positive. Yvonne was advised to terminate her pregnancy, but she tested negative for HIV, so Mike and Yvonne decided to continue with the pregnancy. Mike said that he remembers being told in the early 1990’s that he also had been infected with hepatitis C.
Mike described the side effects he has experienced from HIV treatment and treatment for hepatitis C over the years. It was not until his third round of treatment for hepatitis C in 2013 that he was able to clear the virus. Mike shared that his ill health has also impacted upon his work and his relationship with his wife. He spoke about how he and his wife always wanted a large family they were not able to because of his infections. Mike explained the various routes they took in attempting to add to their family and said that they were not allowed to adopt because he had HIV and hepatitis C. They were permitted to foster children and have fostered 6 or 7 children over the years.
Mike also spoke about his involvement with the Birchgrove Group which he described as being like a self-help organisation. They were all men around the same age with similar experiences. They were asking challenging questions and providing information and a forum for people to meet and share their experiences. Mike said that before he found the Birchgrove group he lived in fear and isolation waiting to die. Mike spoke about the work the Birchgrove Group has done such as raising awareness about treatments, the establishment of the Woodland Memorial and the establishment of an outreach post for the haemophiliacs who were not getting the support they needed. Mike said he found purpose with the Birchgrove Group and he also talked about the friends he made in the group who have since passed away. He shared how difficult it was to watch these friends die and the guilt of being one of the lucky ones who has survived.