Liz talked about the fact that she lost two husbands because of infected blood.
The first was her teenage sweetheart, Jeremy, who she knew was a haemophiliac. She remembered the AIDS campaign and although she didn’t initially connect it with haemophilia, when they did ask the consultant about it in 1987, they were told not to worry as factor 9 products had to go through an additional heat treatment and there were no cases reported of his patients getting HIV.
In around 1996 her husband was called in for an appointment, told that he had hep C and that he had had it for approximately 10 years as his liver was now showing signs of damage. The doctor explained that they couldn’t say anything before as they had no name for it and it was known only as “non-A non-B”.
Her husband had interferon and ribavirin treatment for 6 months.It had a terrible effect on him and he stopped communicating, spent hours on the computer, had rages and insomnia. The treatment changed him as he became short-tempered, impatient and tired all the time… and it didn’t clear his hep C.
By 2008 he developed stomach pains and was vomiting blood, and subsequently suffered a cardiac arrest and died.
Liz threw herself into caring for her son and trying to sort out their future – downsizing, selling all that they had and applying for the Skipton Fund.She said it was not until many years later that she suddenly had a severe mental breakdown and started grieving.
Later she met Paul who was a haemophiliac and he told her that he had had HIV and hep C for about 25 years.
As a result of being the victim of a couple of violent assaults which had a big impact on him he had became isolated but, after meeting Liz, they just clicked and helped each other.She described a happy and quiet life that they shared.As time went on his health worsened however and developed cirrhosis, chronic kidney disease, high blood pressure, arthritis, stroke and hypertensive retinopathy which then led to him losing his sight.As his liver started to decompensate and complications arose from that, the doctor advised Liz that he wouldn’t have long to live.After he subsequently suffered a series of cardiac arrests, Liz had to make the heartbreaking decision to turn off his life support at the end of last year.
Again, she found little help from others and was given little support by EIBSS (who had replaced the Skipton Fund) – the payments were stopped and she was only advised of the top-up payment from another and then that took 4 months for it to come through. She has to reapply annually and had to move house yet again to survive.
At the end of her testimony she described how equally important these two men were in her life: “my heart overflows with love for the pair of them. They were amazing men and they need their stories told, both of them.”
As a result of an appendectomy, Theresa received a plasma transfusion in 1983. It was not until 2002 that she was actually was diagnosed with hepatitis C, and soon after her young son, Tom.
She said her experience overall was perhaps better than many – she received good care when she was diagnosed; treatment was difficult but worked for her and her son.She had had many concerns about transmission but this had got better since she was treated but it was clear the information she had received,as for so many, had been confusing and it was many years before she was made aware of the financial support both she and her son Tom were entitled to.
She felt there had been no real effort made with the look-back exercise and wondered how many lives had been lost already as a result of this, it was clear she now had a mistrust of the NHS as a result of her experiences.
He was diagnosed with HIV aged 4 and his parents were advised he would be lucky to reach the age of 10. At the age of 12 he was advised of his diagnosis and he heartbreakingly recalled how he said, “Am I going to die”… It was in a later conversation with his parents that he realised, although they tried to conduct it in a light hearted way, essentially they were trying to find out if he would prefer a cremation or a burial in anticipation of an early death.
His testimony was extremely powerful.He later closed with an astute summary of a possible way forward for healing and justice for everyone.He thanked Sir Brian Langstaff and the team and said, “The hearings themselves are so much more than allowing people to tell their personal stories. They have allowed people to come together and share experiences they thought only they had been through. Alongside the recognition it provides, it has allowed people to realise they are not alone. There will be more difficult times ahead, but I feel we are in safe hands.”
Robert was also a haemophiliac.He estimated he had 3500 injections since the late 60’s.He was told in 1995 that he had hep C, also HBV and HDV and HIV.
This had all had a massive impact on his life – few long-term relationships, no children, not wanting to study, financial difficulties, couldn’t get a mortgage, ill health and quality of life greatly affected.
In his closing statement, he talked of how initially, cryoprecipitate was a complete game changer for haemophiliacs:“You know, one of the problems is that for most of my life, and I know for a lot of people who live with haemophilia in my generation, we have been seen as essentially a failure, and it makes me angry because in my generation, when I was born in the late 1960s, the revolution that gave me everything that I have now — and I have been able to do many things, I have been able to travel around the world, I have been able to pursue interests, I have been able to walk here and walk out — all because some remarkable people developed a treatment that solves my dilemma.
“But unfortunately those people got betrayed I think as much as we did, and that is they perverted this treatment for profit. The original discovery of cryoprecipitate I believe was done in America at Stanford, and it was done by public money. It was people that cared enough to do these things. The drug companies got hold of this stuff and it has been a nightmare. In the press they always say, which I know we all understand, it was one of the greatest disasters in NHS history, but to me it was one of the greatest successes that became the greatest disaster. That adds to the problem. It adds to the catastrophe, because it was all good. When I was born, things were getting better. For the first few years of my life, I had a treatment that my parents couldn’t believe even existed, and it gave me the ultimate achievement, which is normality. I can walk around and people don’t even know there’s anything wrong with me. I went to a local school. I played with my friends. I rode a bike. I climbed a tree. I even competed in sport. And I could not have done that without the treatment.”