The experts questioned by Katy Scott were as follows:- Professor Gareth Tudor Williams, Professor Graham Cooke, Sian Edwards, Dr. David Johnston, Dr. Ian Williams and Professor Jane Anderson.
The experts responded to two letters of instruction and have prepared a report and a supplemental report to follow.
The experts were asked to explain ‘What is HIV?’ and they responded by providing a clear and concise explanation of HIV and its subtypes HIV1 and HIV2. They explained about the transmission of AIDS, the structure of the virus and the treatment for this. It was noted that although very unusual, it was not impossible for a person to suffer with HIV 1 and 2.
The experts were asked to explain about the 3 stages of untreated HIV i.e. primary, chronic and advanced. They explained that in the primary stage of the virus, the body produces antibodies, the viral load replicates and the person will suffer ‘flu-like’ symptoms. Diagnosis is usually made in the primary stage of the virus. The experts gave an explanation as to how HIV 1 and HIV2 are two separate viruses, HIV1 being the main infection. HIV 2 is more common in West Africa. It was explained how HIV1 attacks the CD4 cells in a person which weakens their immune system making them prone to infection.
The experts were shown a list of AIDS related illnesses and asked to explain the symptoms and pathogens a person would suffer as a consequence. A copy of the HIV report can be found at www.infectedbloodinquiry.org.uk). The experts explained in detail about the difficulties and the terrible side effects of the drugs that were taken during the 1980/1990’s. It was stated that diagnosis is critical in relation to HIV treatment, but there were limits on the treatment in the 1980/1990’s particularly concerning treatment for children.
The psychological impact of HIV and AIDS was discussed as well as the huge stigma surrounding this in the 1980’s through TV adverts etc. The experts explained it was a particularly difficult time for infected adolescents going through puberty at that time. There was very little support available, particularly for the wider family members and particularly in rural communities. Co-infection was discussed and it was stated that medications provided more difficult in these cases.
The experts discussed treatment for HIV i.e. AZT – this was considered ‘not fit for purpose’ as it caused anaemia. DDI (dual therapy) treatment was considered difficult to take. Triple therapy – protease inhibitors (1996/97) showed clinical benefit and treatment was tolerated better. Children were kept on primary treatment longer because they were more challenging to treat with other therapies. The experts referred to the SMART study in 2000 as ‘pivotal’. Medications became more tolerable as control of the virus was much better.
The experts were asked about modern treatment – they explained that a person receiving treatment for the first time now would have a totally different experience as there has been so much progression with treatment and support to the person infected and their family. A question was posed to the experts: what’s the impact on life expectancy compared to somebody that doesn’t have HIV? Sir Brian Langstaff stated: it must be the case that no-one in the UK has suffered from AIDS for longer than 40 years, so, so far as those with haemophilia were concerned, the cohort may be largely younger than older. How do we know what the life expectancy is going to be? To this question there was rapturous applause from the audience. The experts replied: We don’t know the answer Sir Brian!
The experts explained that there is still not a ‘cure’ for HIV or AIDS. However antivirilogical therapy allows the immune system to recover and with adherence to therapy, people infected with HIV and AIDS can lead a normal life without risk of transmission of the virus.
HIV care is free at the present time and self referral is possible. A holistic approach is encouraged to those infected.
Sir Brian Langstaff asked the experts specific questions concerning a picture described as ‘HIV treatment explained’ in the expert report for clarification of his understanding of this. The experts provided a detailed explanation to Sir Brian.
Sir Brian Langstaff then welcomed questions from Core Participants of which there were many.
Sir Brian Langstaff concluded by thanking the panel of experts for taking the time to provide their expertise and also their patience in answering the Core Participant questions.
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