Day 36 of the Infected Blood Inquiry – Cardiff

Another member of our team attended the hearing today for the first time. At the time of writing the online links to watch proceedings were still not up yet, but you can read the full testimonies here.
Michael and Monica
Michael spoke about his son, who was a haemophiliac and how despite regular trips to hospital for bleeds he was not informed for six years about his diagnosis of hepatitis C and HIV. It is believed he contracted them both at Cardiff Royal Infirmary in 1984 because the batch of blood was traced due to another victim dying as a result of being infected with the same batch.
His father described him as a devoted family man and a dedicated architect who didn’t moan about much in life. His wife Monica then shared her story of meeting him whilst they were studying at university in the mid 90s and whilst she had to return to America they remained in contact. It was at this time he was told by another specialist that he had HIV. He was asked if he was coping okay by a new specialist who had read his notes. Understandably he was distraught about this and caught a plane to America to let his partner know. She stuck by him and they got married but within four years he was on the emergency transplant list due to advanced cirrhosis and eventually got a transplant. Unfortunately he went into rejection with the new liver and passed away.
This was such a tragic story, most of us who were there left in tears.
Mr AF
AF was also a haemophiliac and had been brought up with his dad and brother who also suffered with haemophilia. He often had bleeds as a child so was home schooled along with his brother, and they would have blood products delivered to them as they were living in a rural area.
Both contracted HIV and hep C from the same batch of blood, but this was not discovered until later when they both became ill. Much later in life they were offered trial drugs to see if that would cure the hep C, but AF’s brother received a placebo as part of the trial and died shortly after. AF actually had the trial drug which cleared him of the virus and he is now being managed well on anti-retrovirals for HIV, although the previous treatments for that had made him very ill in the past.
He described how he is living with “survivors guilt” due to his brother receiving placebo which was heartbreaking and how he isolated himself due to not wanting to be labelled. He also spoke about the difficulties in getting the ex-gratia payments he was entitled to and how he had had to beg just for money to get by.
Jane
Jane sat with her long-term partner Tommy, she had contracted hepatitis C from a blood transfusion following a miscarriage she had in 1982. She didn’t have any symptoms for years so pushed it to one side until she started getting dizzy regularly which eventually led to her diagnosis. She was prescribed interferon which she said made her very ill straight away, but she persisted for 12 months. Although initially clear the hep C returned within two weeks of finishing.
Over the following years she did interferon three more times, the last of which led to her trying to commit suicide so she was kept in hospital by a psychiatrist and not allowed to try again.
Her liver had started to get cirrhotic rapidly so she was placed on the transplant list in early 2015, by then however she was classed as too ill to actually have a transplant. She was prescribed DAAs for three months and she cleared the virus successfully first attempt before finally receiving a liver transplant in 2017.
We spent some time with Jane outside and she described how she woke up feeling like a new person after previously being so dreadfully ill for so long prior to that, indeed for most of her life. She spoke about the ripple effect the illness and everything she had been through had had on her partner, children and wider family as “catastrophic”.
Anonymous
She spoke at the hearing to represent her late father. Her father’s cause of death was defined by nurses at the hospital as “hepatitis” and also “asbestosis” even though he also had leukaemia but later on when they requested a post mortem it was declined due to the mortuary being fumigated, the registrar asked if he could record death as leukaemia due to massive delays if he didn’t and it was agreed at the time.
Four months following the death a letter was received asking if her father had had any unusual symptoms as they were concerned about potentially infected blood back in 1973.