Day 56 of the Infected Blood Inquiry hearings, London

Jyrna

Jyrna’s telling of her and her late husband’s experience of infected blood was brave, raw and extremely emotional. Sitting beside her late husband’s brother at the Inquiry hearings on Thursday, she narrated her story with incredible composure and earnestness, holding the full attention and sympathy of the packed Inquiry room.

Jyrna and her late husband Donald loved to go camping on the Isle of Skye in Scotland. One day out climbing on the rocks in the mid-80s, Donald fell and was rushed to hospital, resulting in his thumb being amputated. A few years later in 1987, an opportunity arose for Donald to have an operation which would use one of his toes as a new thumb to replace the one he lost. The operation itself grew complicated and ended up taking 11-and-a-half hours, during which time he was told he had received blood plasma – although there is no mention of this on his medical records.

Life went on and Jyrna and Donald moved with their young family to fulfil their dream and live on Skye. She described it as “a beautiful, very gentle life… a free, free, happy space on Skye”. Unfortunately, the dream world they had created was shattered when Jyrna, a regular blood donor, received a letter in 1994 saying she could no longer donate blood because she was infected with a blood-borne virus called hepatitis C. Her concerns and confusion were not allayed by the doctor she visited in the aftermath of the letter, who she said didn’t seem to know much about hepatitis C himself. The doctor gave her a letter on the transmission routes of hepatitis C but provided no information about possible treatment, symptoms or its impact on her liver.

Donald was diagnosed with hepatitis C after Jyrna, and initially they thought he must have received the virus from her. Later, on remembering the plasma given to Donald during his operation, they realised it must have been the other way around. Jyrna described a liver biopsy the next year where the Consultant Hepatologist at the hospital “interrogated” the couple about their sexual partners and history, drug use and tattoos in a “condescending manner and with an autocratic style”. Jyrna said she felt like they were being blamed for having the virus: “It’s bad enough having an infection you know nothing about, but we were also treated like we were pariahs. We were just in a limbo and we had two little boys.”

Jyrna and Donald’s sons were a big part of the reason they both stopped taking the Interferon treatment they were offered in 1995. The drugs had a severe effect on Jyrna’s mental health and led to her feeling exhausted, stressed, paranoid, estranged and unable to work as a paramedic. She stopped taking the treatment after a month and, as a sign of solidarity, so did Donald, with the rationale that they could not look after their sons if they were both struggling.

At almost every stage Jyrna felt that her and her husband were sidelined by the health services, from a letter her doctor sent without her knowledge to her workplace describing the impact of hepatitis C and Interferon on her ability to succeed at her job, to the continuing lack of information she received about the virus, to being repeatedly put to the bottom of surgery lists for other health conditions because of being seen as a “risk to others”.

Neither of them were offered the more effective DAA treatment available from 2015 onwards until Donald was rushed to hospital with severe liver damage in the summer of 2018. Although he was told that it was too late for him, and despite her feelings of “disloyalty” and “guilt”, Jyrna soon began DAA treatment and successfully cleared hepatitis C following encouragement from her husband.

Jyrna’s description of Donald’s deterioration over the next year reduced most of the room to tears. With “the love of my life” having died in only July this year (2019), Jyrna’s grief was still incredibly raw and powerful. Jyrna mentioned the inadequacy of the payment scheme but she was clear that “money does not bring back the person you wanted to spend the rest of your life with”.

Myles and Paul

Although Myles is a year-and-a-half Paul’s senior, the brothers look like they could be twins, and in fact have been of great interest to medical professionals throughout their lives due to their being genetically identical. This interest at points appeared to the brothers to be something altogether more sinister; they often felt that they were lab rats excluded from their own medical history and experimented on without their consent. Their deep distrust of health services as a result of their experiences following infection with hepatitis B and C from infected Factor IX products to treat their haemophilia has clearly stayed with them to the present day.

As with Jyrna and Donald, Myles and Paul’s experience is characterised by uncertainty as to the impact of the infections on their body and a sense of health professionals going behind their backs. Myles recalled excessive numbers of blood tests being done on him, some very painful, and apparent monitoring of his liver over time which made no sense in the context of his haemophilia. He believes this is evidence of his doctors’ knowing about the risks of hepatitis C infection from being treated with Factor IX and not informing him. The brothers found evidence of their being given pseudonyms and having medical files under different names, which explains why the medical records they requested are surprisingly sparse.

Describing himself as a “loner” at school, Myles told the Inquiry about the one friend he had made in hospital who had been infected with HIV through treatment for his haemophilia. His new friend’s family was Catholic and had disowned him because they thought his HIV had come from behaviours they deemed to be immoral. Myles recalled sitting with him when he died in the hospital and hugging him tight before hiding as people came to take him away. As the undertakers took care not to touch the body without gloves on for fear of infection, Myles heard them singing “Another one bites the dust” in a shocking and abhorrent display of disrespect.

Again, the brothers were given drastically insufficient information about the hepatitis C they were diagnosed with in the mid-1990s, leading to their mother, who felt responsible for the infection because she was the one who gave them Factor IX injections, writing a beautiful and heart-wrenching letter to their consultant asking for more information about the risks of treatment. “They are only starting their lives,” she wrote, “and I want them to be happy and it’s breaking my heart to see them hurting so much. The pain they are suffering emotionally just now is far worse than any bleed they have ever had.”

Tragically, her fears were confirmed when the Interferon-based treatment Paul and Myles were put on made their mental health worse. They described how they continue to feel its impact today, both in themselves and their families. Myles described being “scared by what was inside me” and that “sometimes it’s like fire ants are going through my skin, I feel so sore, so tired; it’s an effort to move”. Even now he feels he is a different person to how he was before treatment, saying “I’ve lost my spark” and now can only feel it through his children: “I was so worried about dying that I forgot to live.” He also described the impact on his teenage daughter who experiences severe anxiety over her father’s health.

Paul talked about how his inability to work made him feel “worthless” and has contributed to a loss of identity. Both brought attention to the inadequacy of the payment system in reimbursing them for the effect of the infection on their lives: “We’ve been left to rot.” Myles’ stirring final statement paid tribute to everyone who has given evidence to the Inquiry so far: “How can so many tell the same story without it being true? You are all heroes and have acted with a dignity and grace that shames those who want to silence us.”

Mrs AU and Miss AV

The final two witnesses, a mother and daughter, preferred to remain anonymous. They told the story of Miss AV’s infection with hepatitis B following treatment with plasma for a head injury in 1995 as a baby. They only discovered her infection a few years later when Mrs AU, her mother, was rushed to hospital with jaundice and diagnosed with hepatitis B, which they think was transmitted from her daughter. While Mrs AU managed to eventually clear the hepatitis B naturally, Miss AV endured a long struggle with Interferon-based treatments from the age of 5 to 18, which had a severe effect on her both physically and mentally and ultimately proved unsuccessful in enabling her to clear the virus. Miss AV described how the ongoing treatment to manage her hepatitis B infection leaves her feeling physically drained and continues to affect her mental health.

The pair recalled the huge pressure the hepatitis B infection put on the relationship between them and family life in general, with Miss AV’s parents going through a divorce and only recently being reconciled. In particular, Mrs AU criticised the lack of financial support they have received, with hepatitis B not covered by the scheme. In her closing statement she described a text she received from her daughter at the start of the week, where she expressed fears and doubts about giving evidence at the Inquiry: “I feel used, heartbroken and abused.”

While both mother and daughter seemed hopeful for the future, it was clear that for them, as for Jyrna, Myles and Paul, the impact of receiving infected blood would continue to have a huge impact on their lives indefinitely.