Infected blood: an appalling medical tragedy

Bloom’s influence

From 1970 to the early 1990s an estimated 30 000 people in the UK were given blood products or blood transfusions infected with hepatitis C or HIV, and more than 3000 have died as a result. Around 1250 people with bleeding disorders were infected with HIV, and three quarters of them have died. Almost all of those with haemophilia who were infected with HIV were also infected with hepatitis C.

The 2500 page inquiry report lays bare the key role that Bloom played. From 1979 to 1985 he was the leading haemophilia specialist in the country, chairing the UKHCDO. His centre at Cardiff was one of seven supraregional reference centres. The report finds it “difficult to understand why UKHCDO and the reference centre directors were so painfully and dangerously slow to recognise and react to the risks of AIDS being transmitted to their patients.”

As for officials in the then Department of Health and Social Security (DHSS), who were equally slow to react, they were largely taking advice from one clinician—Bloom. Diana Walford, who was a medical officer in the DHSS at the time, told the inquiry that the department’s medical staff “did not attempt to interfere with the practice of clinicians, who jealously guarded the concept of clinical freedom.”

Bloom’s views, says the report, were also “heavily influential” on the Haemophilia Society, the charity representing people with haemophilia, leading it to adopt a “head in the sand” attitude and to downplay the risk of developing AIDS.

The spread of AIDS

By the mid-1960s people with haemophilia were being treated with the frozen blood product cryoprecipitate. By the early 1970s drug companies, chiefly in the US, began separating the factor VIII protein from pooled plasma, creating products that were much more convenient to use and could be administered at home.

The UK was still not self-sufficient in blood products, and the commercial products, which were licensed for use in the UK from 1973, were embraced by haemophilia centres. But the plasma was pooled from the blood of tens of thousands of paid donors, many from high risk groups such as prisoners and drug addicts.

By the mid-1970s there were repeated warnings about the risk of infection from factor VIII imported from the US. The virus that causes hepatitis C wasn’t identified until 1988, but there were warnings of its risks from 1974. For some time a number of doctors held the view that hepatitis C was a mild or benign disease—which was “a collective failure of judgement among the many who asserted it,” says the inquiry report. By 1978 there were reports that the virus, then named non-A non-B hepatitis, was linked to persistent liver damage.

In July 1982 the assistant surgeon general of the US wrote to all haemophilia centres in the country to alert them to the spread of AIDS to people with haemophilia. A week later the US Centers for Disease Control and Prevention (CDC) reported three cases of AIDS in people with haemophilia. In the UK, Harold Gunson, consultant adviser on blood transfusion to the chief medical officer at the DHSS, was alerted that same month.

At a meeting at Heathrow Airport in January 1983 including 21 doctors who treated haemophilia, John Craske, a virologist with the Public Health Laboratory Service, told attendees that AIDS was an “intractable” disease and that five of 10 people in the US who were infected had died. In March 1983 Bruce Evatt of the CDC wrote to Bloom to tell him that the US had 13 confirmed cases of AIDS among people with haemophilia and a further five highly suspect cases. All had received factor concentrates. The inquiry report notes, “There is no evidence that Professor Bloom circulated this letter at the time.”

In April 1983 Bloom reported a probable case of AIDS at his own haemophilia centre to the Communicable Disease Surveillance Centre. But a few days later he sent a statement to the Haemophilia Society’s members saying that “the cause of AIDS is quite unknown and it has not been proven to result from transmission of a specific infective agent in blood products.” He added that the number of AIDS cases was small and that, “in spite of inaccurate statements in the press,” he was unaware of any proven case in “our own haemophilic population.”

In May 1983 Spence Galbraith, director of the Communicable Disease Surveillance Centre, sent a paper to the DHSS in which he stated, “I have reviewed the literature and come to the conclusion that all blood products made from blood donated in the USA after 1978 should be withdrawn from use until the risk of AIDS transmission by these products has been clarified.”

A few days later a meeting of UKHCDO reference centre directors decided that it would be “circumspect” to use only NHS materials for young children and people with mild haemophilia but that there was, “as yet, insufficient evidence to warrant restriction of the use of imported concentrates in other patients in view of the immense benefits of therapy.”

But in October 1983—two months after the UK’s first known death from AIDS in a person with haemophilia—Bloom dismissed a suggestion at the UKHCDO’s annual general meeting that patients should revert to using cryoprecipitate, saying that “he felt that there was no need for patients to stop using the commercial concentrates because at present there was no proof that commercial concentrates were the cause of AIDS.”

“There can be little doubt,” says Langstaff in his report, “that possibly by March 1982, and certainly from July 1982 onward, it was known in the UK to both some clinicians and some within government that there was a real risk that blood, and blood products in particular, might transmit the cause of AIDS.” By the end of 1982, says the report, “haemophilia centre directors (according to Dr Charles Rizza, the director of the Oxford haemophilia reference centre) knew there was a real risk that AIDS could be transmitted by an infectious agent carried by blood products.”

Clinicians should have made time limited changes, such as reverting to cryoprecipitate, to deal with the crisis, Langstaff concludes. But the official rhetoric was “that of reassurance rather than realism.” Haemophilia clinicians “failed to adjust treatment policies as should have occurred; failed to tell patients adequately of the risks to them as individuals; and when infections were known, frequently failed to tell the patient concerned as soon as they reasonably could, or appropriately.” The failure to explain the risks and benefits of treatment to those being treated was “widespread and profound.”

Children infected

Despite the UKHCDO’s conclusion that it would be “circumspect” to use only NHS products for young children and people with mild haemophilia, children were given commercial products during trials without their parents’ informed consent. Among those instrumental in the research was Craske of the Public Health Laboratory Service. The report states, “Previously untreated patients—in particular children—were sought out to become the subject of research, and in some cases to be given treatments which were unnecessary or conferred no advantages but only additional risks.”

Around 380 children with bleeding disorders were infected with HIV. “Many of those died in childhood or young adulthood, having endured a level of pain and fear that no child or young person should ever have to face,” says the report. “How did it happen that in the second half of the 20th century so many children could be infected with fatal viruses from their NHS treatment?”

What happened to the pupils at the Lord Mayor Treloar college in Hampshire—which was seen as a unique resource for research owing to the number of children with haemophilia who boarded there and the presence of an NHS haemophilia centre on site—was a “nightmare of tragic proportion,” says the report. Of the 122 pupils with haemophilia who attended the school from 1970 to 1987, only 30 survive.

Pupils were enrolled in trials of prophylaxis and given weekly or more frequent injections using large amounts of commercial concentrate from different manufacturers. The risks were downplayed, and parents didn’t give informed consent. Langstaff concludes in his report that it was known at the time that this “enthusiastically intensive and largely indiscriminate” use of large amounts of different commercial concentrates was unsafe. He states that clinical staff were well aware that the heavy use of these products risked causing AIDS. In October 1979 Craske had alerted the school to the fact that mixing different manufacturers’ products might increase the risk of hepatitis.

As well as those infected through blood products, around 26 800 people were infected with hepatitis C, and 80 to 100 were infected with HIV through blood transfusions. The overenthusiastic use of blood by clinicians in the 1970s and the early 1980s, particularly surgeons and obstetricians, caused some patients to be given unnecessary transfusions. Women were “topped up” after labour to help get them “up and about” caring for their babies, when they could have been given iron tablets. Doctors delayed “telling patients they had hepatitis C, or should be tested for it, thereby preventing the individual from controlling its worst effects, seeking timely treatment, and limiting the spread to others.”

The UK wasn’t alone in having an infected blood scandal. In some countries, such as Canada, France, and Japan, criminal prosecutions were brought decades ago. But the UK is an outlier in having resisted an investigation into the facts for so long. Successive UK governments covered up the truth, claiming that the infections had been inadvertent and that the treatment given was the best available.