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Knowledge of Haemophilia

Jenni Richards QC made the presentation into Inquiry of Medical and Scientific material relating to the development of knowledge of risk of infection from blood and blood products. The purpose of the presentation was to place the relevant material in the public domain for the wider public to understand and to provide a backdrop. Four key elements were to be examined: Development and knowledge of risk of blood and blood products from the 1940s to the 1970s; Non A Non B in the 1970s; the developing picture of HIV and AIDS and the development and discovery of hepatitis C.

Ms Richards considered a good starting point would be the early 1940s. The presence of jaundice in Army personnel in the 1940s was noted, thought to be caused by yellow fever. The first occurrence of jaundice resulting from the transfusion of blood was reported in 1942, although not made public. Around this time, it was recommended that vaccinations containing human serum be suspended, blood batches should be recorded, and records should be kept. Ms Richards referenced a confirmed case of hepatitis in 1944 caused by injection. She explained that documentation showed that the Ministry of Health at that time recognised that blood transfusions should be avoided unless crucial, and that hepatitis was associated with human serum. The Ministry of Health was also aware of the high fatality rate following transfusion. It was also recognised as far back as the 1940s that there were higher risks of hepatitis with pooled plasma.

Ms Richards referred to documentation which showed that in the 1950s a medical expert notified the Ministry of Health that he had abandoned using large pooled plasma because of the potential risk of infection.

In the 1960s the advice to practitioners was not to transfuse, unless it was absolutely necessary. The risk of blood taken from donors in the USA was acknowledged and health professionals recommended that measures should be taken for blood safety. Ms Richards referred to articles in the British Medical Journal around 1968 concerning the presence of hepatitis in haemophiliacs.

Documents show that in early 1972 President Nixon authorised a study into the US blood collection and distribution system. A copy of the report of the study was provided to the UK Department of Health.

In the same year two forms of hepatitis were identified: hepatitis A and B and serum hepatitis. 1974 saw the first reference to Hepatitis C and was reported in the Lancet.

During the presentation, Ms Richards played the World in Action programme first shown in December 1975 called ‘Blood Money’. In Part 1, the programme reported on the risk of using the commercial concentrate Hemofil and the long-term effects. It concluded with the recipients confirming UK self-sufficiency was preferable to using American products. It was reported Lord Owen provided £500,000 to speed up the process of self-sufficiency at Elstree. In Part 2, Professor Arie Zuckerman, a British Hepatitis Expert travelled to the US to visit blood donor centres. He questioned representatives of pharmaceutical companies in the US as to whether they were aware of the dubious conduct of donors contributing to their pooled plasma and the risk of infection. Medical experts confirmed the risk of infection from a large plasma pool in the US was 100% at that particular time.

Documents from 1976 through to the 1980s were also referenced by Ms Richards which acknowledge the risk of pooled plasma from the US also the study and development of chronic liver disease in people and children with haemophilia. (articles were published in the Lancet, Hansard and the British Medical Journal in this regard).

The first person with AIDS in the UK and first cases noted of haemophiliacs who had received blood products infected with PCP is reported in 1981. A transmissible agent is suspected, and reports of a new disease linked to commercial products. 1982 reports of a high mortality rate from AIDS.  The media report of an AIDS link with hepatitis and haemophilia. They also report of an infant in San Francisco infected with AIDS from multiple blood transfusions.

In January 1983 a meeting attended by Haemophilia Reference Directors from all over the UK shared information concerning the diagnosis of AIDS and decisions were made to not inform patients and not to change treatment.  Documents relating to the Department of Health and communication between Ministers, the Haemophilia Society Centres and Blood Transfusion Centres infer, the stance at this time is there is no conclusive proof of any risk of products from the USA.  When the first case of suspected AIDS in a haemophiliac treated with American FVIII was reported in Cardiff, with three similar cases reported in Spain, a letter was sent by a medical professional to Ministers recommending that American blood products be withdrawn.

Further documents throughout 1983 reference increasing indications AIDS can be transmitted by pooled products and the advice from the Council of Europe was that large plasma pools should be avoided, and recipients and practitioners should be informed. At a meeting of the Haemophilia Directors in October of this year it was reported that patients were refusing treatment with American blood/blood products because of the risk of infection and wanted to change to cryoprecipitate. It was agreed that patients should continue to use FVIII and not Cryoprecipitate as there was no evidence of any risk.

In November 1984 Kenneth Clarke, Minister of State for Health states in correspondence there was no evidence suggesting American products were responsible for the infection of AIDS. In December 1984, it is recommended Haemophilia Centre Directors need to take decisive action and in January 1985 two new groups are set up by the Department of Health. HCD Group and Expert Advisory Group on AIDS. In 1985 a submission was put to Ministers on screening for AIDS antibodies and the introduction of a test.  The Elisa test was submitted for approval in 1988. At this point, the Panorama programme: ‘Bad Blood’ was played. The programme included the lack of information to patients of their possible infection, the inadequacies of screening, UK not testing whilst other countries were doing so and a lookback exercise.  The programme reported possibly a quarter of a million people were infected. The Horizon documentary ‘Killer in the Village’ was also played during the presentation, tracing the spread of a newly transmitted disease, AIDS across America and whether an epidemic had reached the UK in London.



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