Dr Bevan spoke of his experience working as a registrar and later a senior registrar at St George’s Hospital in Tooting from 1978-1984. In 1984 Dr Bevan was appointed senior lecturer and honorary consultant at St George’s. Throughout this time, Professor Flute was the director of the Haemophilia Centre in St George’s. When Professor Flute left St George’s in 1985 and subsequently retired, Dr Bevan became the consultant responsible for haemophilia and essentially became the Haemophilia Centre director. In 2008, Dr Bevan moved to St Thomas’s hospital where he worked until retirement.
Dr Bevan described the facilities available to haemophilia patients at St George’s hospital. Dr Bevan said in terms of numbers, the amount of severe haemophilia patients ranged from around 25 up to 35, with another 50 mild to moderate patients. He spoke about the decisions made on which products were given to patients in the period of the late 1970’s to mid 1980’s. Evidence showed that in 1976 compared to 1983, less cryoprecipitate was used and much more NHS Factor VIII concentrate was used as well as Armor Factor VIII; there was a significant increase of commercial concentrate. Dr Bevan confirmed that until he took over as director in 1985, decisions on what product to use was made by Professor Flute.
Dr Bevan said that Professor Flute would only share decision making on a need-to-know basis. Dr Bevan shared that he did know Dr Flute wanted to treat children and young adults with NHS concentrate as he thought it was less likely to transmit what was known as Non-A, Non-B hepatitis (hepatitis C). However, the supply of the NHS concentrate was insufficient and therefore many patients would be treated with Armour products. Dr Bevan said he believed Professor Flute would tell patients in a reassuring way about potential liver problems associated with the blood products. However, he thinks neither Professor Flute or the patients were fully informed of the risks.
Dr Bevan then spoke on his own knowledge of the risk of hepatitis. He said he was made very aware through his training of the risks of hepatitis B and by the time he took up haematology, this risk had effectively been excluded as hepatitis B could be screened for. When Dr Bevan became a Registrar he knew most haemophiliacs were being infected with what was known as ‘serum hepatitis’, later known as Non-A, Non-B hepatitis and eventually hepatitis C. This form of hepatitis was explained by his mentor to him as a trainee as generally harmless and inevitable. Dr Bevan recalled hearing a talk from Dr Crass in 1979 was when he first understood this type of hepatitis could be serious, but he believed there was a distinction between different Non-A, Non-B hepatitis forms and it was sometimes harmless. Dr Bevan said that patients should have been told from at least 1979 onwards about risks clinicians were aware of. From when he became Director in the summer of 1985, as far as he recalls, his practice was to inform his patients of the risks as known at the time.
Dr Bevan said he became aware through publications in journals about what would later be called HIV in 1982. He described his reaction as alarmed as he knew people with haemophilia would be at risk for any blood borne infection. He then spoke of a conversation he and a colleague later had with Professor Flute. Profesor Flute did not regard HIV as a concern. Professor Flute said he would not take action in changing their practice if there was no official guidance to do so. As a small centre it was essential to stick to guidance from UKHCDO. Dr Bevan explained Professor’s Flute’s reasoning, as by following official guidance they would not be vulnerable to any claims of negligence. Dr Bevan said that in hindsight, on principle, patients should have been told of the risk by at least 1983, although he understood Professor Flute’s view would have been that they needed more proof before advising patients.
Dr Bevan then spoke of his actions when he took over as Director in summer of 1985. By this point, nearly all the Factor product they used was heat treated, and he believes it was all heat treated by mid 1985. Before Professor Flute left, samples were taken from patients to test for HIV. The results arrived when Dr Bevan took over so he had to inform 15-18 infected patients, 3-4 of whom were children. Dr Bevan said he informed his patients with principles he had learned, telling his patients the truth and in confidence. He said that testing of partners was subsequently introduced and offered, and partners were usually negative. When his patients were tested for hepatitis C in the early 1990s, patients were told about long term consequences such as the risk of chronic hepatitis. He said he largely did not press biopsy on his patients, as such procedures are hazardous to haemophiliacs. Dr Bevan said with the absence of clinical evidence of live disease, it was regarded as a minor problem compared to HIV.
Dr Bevan also gave his opinion of the actions of the UKHCDO. He views their actions as determination to never withhold treatment and to not alarm the public. They continued to hold the line well into 1983, even though by then HIV infection in people with bleeding disorders was well established. Dr Bevan said in retrospect he believes that older generation of doctors viewed not wanting to withhold treatment as a priority over safety as they had trained when the survival of people with haemophilia was more at risk, at it had been common for haemophiliacs in young adulthood confined to wheelchairs.
Dr Bevan spoke about pharmaceutical companies. Direct donations from companies did not happen, however companies would provide sponsorship to send them to major international conferences. The companies would usually put them up in nice hotels and take them out for meals. The companies also at one stage offered nurse specialists to teach patients to administer products at home. Dr Bevan agreed the motive of the pharmaceutical companies was to influence clinicians to choose products from their companies, but at the same time this was mostly after the fact. However, in 2005 centre directors purchasing blood products were eliminated and centralised purchasing was introduced. Dr Bevan said the benefits were the reduction of cost and that it lifted an ethical weight from haemophilia doctors.