Today we heard from three haemophiliacs who shared their experiences
Paul was diagnosed with haemophilia A and received factor VIII.
During his testimony they showed a letter from his haematologist recommending to use NHS products rather than American ones. He started home treatment and in 1976 started receiving the USA products. By April 1977 he had caught acute hep B and suffered weight loss and jaundice and all the family had to be tested. He and the family were given lots of support around all of this. He was just 13 years old and was told that he was very unlucky to have got this. Around the same there was a World in Action documentary highlighting HIV in blood products in the USA. As a result of this Paul asked his specialist about HIV at his next appointment and the doctors played it down, but just 8 years later was told he had HIV.
There were two leaflets in 1984 that the Haemophilia Society produced at this time called “Haemo Facts” reassuring this community that only 1 in 1000 that had been infected with HIV from blood products when the truth was that it was around 33% of haemophiliacs. The NHS had also been testing for the HTLV3 indicator (an early test for HIV) without the patients consent for a while before this, suggesting they knew there was the possibility it would be present.
Paul talked about being diagnosed with HIV aged 21. He said he was called into a tiny room with no windows that resembled a storage cupboard and had taken an hour off work to attend, as in the letter there was no warning about what he was going to be told, so he believed it was just a routine appointment.
The doctor made no eye contact with him and told him he has HIV+. When he asked what that meant the doctor said it’s the virus they call AIDS and that he had 2-4 years until it became full blown. He was told to not have unprotected sex and advised to keep it a secret.There was no other support given and no suggestion of getting his partner tested.
So this was a very different experience to when he had his diagnosis of hepatitis B. He reflected how it was the shortest, most ill-informed and worst prepared appointment he had ever been to and how from this day on he was devastated and felt lost, alone and unsupported. He had no further appointments after this news for two years until 1987 when he was finally referred to a HIV clinic.
He described how he saw the impact of this virus on the gay community there, many of the men looked visibly very unwell and that he was more supported by them and the Terence Higgins Trust than by the NHS.
When he was then told he had HCV, again he found he got more support from The British Liver Trust and Mainliners, an organisation that supported people who had hep C as a result of injecting drug use, than from the NHS.
The impact of his HIV diagnosis was he was constantly in fear of death, he was aware of the stigma and was repeatedly told to not tell anyone. He lost his job, had sleep problems and had not been given any tools on how to manage it. He said he cried a lot at this time, alone in his room at night.
When did get a referral to a self-help group for people with HIV, he found there were 4 or 5 friends of his from childhood.Some of them were being given AZT and they looked the most ill in the group. Paul started to get angry and wrote a letter to Ken Clark MP about what had happened.He wrote back saying it was not the NHS’s fault. 27 years later Paul wrote another letter to him and he stuck to same script saying it was not the fault of the government or the NHS.
He did have a good relationship with his hepatologist but did not want to do the interferon treatment. Later when new treatment was being trialled, he tried to get on it but was refused due to his HIV as they only wanted very healthy people for the trial. He told them if he did not get given it he would go to the papers and a week late it was offered to him.
Paul also said that no one chooses to have HIV or hep C, even if their lifestyles put them at an increased risk. He also talked about pharmaceutical companies and what measures are taken to ensure products are safe and not just driven by making money,
He was also a haemophiliac (haemophilia A), who received Factor 8 as a baby. By 1984, when he was just 7 years old, he was diagnosed with HIV, but not told until he was 12 as his parents wanted to protect him but both he and his sister knew there was something wrong as the household went from being happy to very sad, with little communication between his parents.
He was admitted to hospital at 12 years old for HIV-related infection and was told about his status by a play therapist as she felt it was unfair he didn’t know. He went onto to be told he was also HCV in 1989 but told that HIV would kill him first. He went on to develop full blown AIDS and was in lots of pain, depressed and suicidal. He experienced lots of stigma around his coinfection and lied about it. He is still aware this stigma is around today and wants to protect his daughter from this.
He later suffered with addiction problems after being prescribed opiates and explained a lot of that was to cover up the mental torment he had about his health and described waking up every day wishing he was dead.
At age 12 he was given an adult does of AZT which had awful side effects but in 2007 he was given interferon and ribavirin for 12 months. This treatment changed him as a person and gave him chronic anxiety and PTSD, he had intrusive thoughts and became almost psychotic. He said he was given counselling over the years but the counsellors didn’t know what to say to him. In 2012 he was diagnosed with chronic kidney disease resulting in a kidney transplant in 2016. He has since had heart surgery in 2019 and had to have triple by-pass operation, they say this was as a result of the HIV treatment.
As a result of all this he described how he had never had a normal life since childhood, his sister was neglected as all the focus was on him, his mum felt very guilty for administering the Factor 8 to him as a child and ultimately his parent’s marriage broke down and they divorced. His adult life has been spent most feeling scared and lost.
He was also diagnosed as a severe haemophiliac after a brain haemorrhage as a child and was given Factor VIII in 1980. His cousin, who was also a haemophiliac was diagnosed with HIV in 1984 and he asked doctors if the same could happen to him. They reassured him and said no as the blood products were now being heat treated which would kill the virus.
However, in 1985 he was diagnosed with hep B which he went onto clear and in 1986, despite being given heat treated blood products he was tested for HIV and it came back positive, though he was not told until Jan 1987. His mother happened to see his file but was told about this over the phone. His parents shielded him from this truth and only started to tell him in stages from the age of 13 years old. First they said there is “something in your blood” and to be careful if he had accidents and it was not until he was 16 years that he was told it was HIV.
His cousin died as a result of AIDS in 1992 from double pneumonia which initially started as a cold.
He was allocated a social worker by the hospital and this man helped him a lot on learning how to live and deal with his coinfections. He moved HIV clinics and was treated immediately for his HIV. He went onto have a full breakdown at 17 which lasted until he was 24.
He described how he spent this entire time in one room, physically beaten down by the medication.There were many side effects, feeling nauseous all the time, lung infections which often the hospital could not treat with antibiotics because they could not find identify what the infection was, often resulting in long hospital stays.
In July 2005 he was diagnosed with B cell lymphoma cancer in his chest. He had 5 rounds of chemotherapy but was simply not well enough to do the final round. He was treated with triple therapy for his HIV as he had become resistant to the previous ones and finally later that year stopped all treatments due to the side effects. In 2007, when he met his wife he wanted to protect her, so went back on treatment for his HIV.
He doesn’t make friends with people as he feels he is “a burden” and always ruins things and so keeps to his safe zone in his house and does not like to go out. If he does, he has to use a mobility scooter.
He talked about the schemes set up for compensation and highlighted the lack of parity between the Scottish and English blood support schemes and also the fact when the primary infected person dies, the monthly payment is stopped and how unfair that is on the family of that person, who may have no other source of income.