Feature

Betsy Goodfellow from Pharmafocus considers the details of the infected blood scandal, from its beginning to the outcome of the recent inquiry

During the 1970s and 1980s, approximately 6,000 patients with haemophilia and other bleeding disorders were given treatments consisting of contaminated clotting factors, some of which contained HIV or hepatitis viruses.1 Many of these patients unknowingly infected their partners and, to date, approximately 3,000 people have died as a result.1 It is thought that about 1,250 people were infected with HIV, including 380 children.1 Currently less than 250 of these patients are still alive.1 Many people who did not have a bleeding disorder, but had blood transfusions during this time period, were also infected with hepatitis C.1

In July 2017, then-Prime Minister Theresa May ordered an inquiry into this scandal and a final report was published in May 2024.1,2

Where did this disaster begin and what has happened in the years since?

Although the events of the scandal did not take place until the mid-1970s, it is relevant that as far back as 1953, the World Health Organization (WHO) gave a warning that dried plasma should be made up of samples from polls of ten to 20 donors, in an attempt to reduce the risk of contamination.2

In 1966, freeze-dried Factor 8 concentrate became available, combining plasma from up to 10,000 donors to achieve the correct dosage. This was used as a treatment for haemophilia and could be administered at home.3 The issue with this, however, was that it only took one donor with HIV or hepatitis to infect the entire batch of Factor 8 concentrate.3

In 1975, Lord David Owen, Labour’s health minister, stated that the UK would become self-sufficient in terms of blood products, pledging £500,000 to be spent on this policy.2

However, by 1978, this plan had failed and the NHS began sourcing its supply of Factor 8 concentrate from overseas to replace the Factor 8 clotting agent.2 Many paid blood donors from the US were prison inmates or had substance abuse issues, and therefore had a much higher likelihood of carrying infectious diseases.3

Blood donations were not yet being routinely screened for these diseases.3

The first cases of AIDS were reported in the early 1980s, and it was noted that many haemophiliacs had contracted it.3 Following the death of a baby from AIDS in 1982 after having multiple blood transfusions, WHO recommended that haemophiliacs should be warned about the potential dangers of blood products in 1983.3 The first suspected batch of infections in haemophiliacs present in the UK was also recorded in Cardiff and Bristol in 1983.3

Later, in November 1983, Ken Clarke, the health minister, stated: “It has been suggested that AIDs may be transmitted in blood or blood products, there is no conclusive proof that this is so. Nevertheless, I can well appreciate the concern that this suggestion may cause.”3 However, blood products were not routinely heat treated to kill viruses until 1984, and they were not tested for HIV until 1986.3

It was not until the late 1980s that the government began making its first compensation payments to victims with the establishment of the Macfarlane Trust in 1987.3 The Trust aimed to make payments to haemophilia patients who had been infected with HIV from NHS blood products – initially it was given £10m by the government, followed by another £19m in 1989.3

Approximately 1,000 victims sued the government in 1988, but these cases were settled out of court.3 Hepatitis C, a previously unknown virus, was identified in 1989 but the first test for this was not made available until 1991.3

Patients registered with the charities gained £20,000 lump sums each in 1990, as well as additional lump sums in 1992 of up to £80,500 depending on their circumstances.3 Some families of deceased victims also received payments depending on circumstances.3 Another charity, the Eileen Trust, was established in 1993, which also intended to provide payments to victims who had been infected with HIV.3

This Trust was initially given £500,000 of funding by the government.3 Through the various charities, patients began to receive compensation throughout the 1990s, however, these were not official government compensation payments. Victims also began to receive letters from the Blood Transfusion Service notifying them of potential contamination throughout the decade.

In the early 2000s, various charities and funds continued to be established to provide some level of investigation and compensation into the scandal, however they were still not official government inquiries.3

In 2015, a Scottish enquiry into the scandal was completed. Then-Prime Minister David Cameron stated that it was difficult to imagine the “feeling of unfairness that people must feel at being infected with something like hepatitis C or HIV as a result of totally unrelated treatment within the NHS. […] To each and every one of these people I would like to say sorry on behalf of the government for something that should not have happened.”3 Cameron’s apology marked the first time the UK government had officially taken responsibility for the scandal.

In July 2017, then-Prime Minister Theresa May announced that a full statutory inquiry into the scandal would take place.3 It was estimated that approximately 2,400 people had already died as a result.3

On 2 July 2018, the Infected Blood Inquiry was formally established and began hearing evidence in April 2019.2

With the onset of the COVID-19 pandemic in March 2020, it was announced that hearings into the inquiry would be delayed until at least mid-September.2 Hearings later resumed on 22 September 2020.2

On 21 May 2021, then-Health Secretary Matt Hancock announced that the government would pay compensation to people impacted by the scandal if the inquiry recommends it, acknowledging a “moral responsibility”.2

In July 2022, it was recommended that surviving victims and their bereaved partners should be paid interim compensation payments of £100,000, with this being announced the following month and confirmed in October.2

In February 2023, the final oral submissions were heard by the inquiry, with a second interim report being published in April.2 Then-Prime Minister Rishi Sunak confirmed that the government would await the full report before potentially extending the compensation scheme.2

Campaigners and victims’ families complained about the delay for compensation, however both Sunak and then-Chancellor Jeremy Hunt maintained that no final decisions had been made and the government would continue to work on the compensation plan.2

Campaigning continued until the report was published the following year, with the final report being published by the inquiry on 20 May 2024.2

The final report stated that:

• ‘Too little was done to stop importing blood products from abroad, which used blood from high-risk donors such as prisoners and drug addicts’
• ‘In the UK, blood donations were accepted from high-risk groups such as prisoners until 1986’
• ‘Blood products were not heat treated to eliminate HIV until the end of 1985, although the risks were known in 1982’
• ‘There was too little testing to reduce the risk of hepatitis, from the 1970s onwards’.4

Now, it is anticipated that the total cost of compensation will be billions of pounds, with someone with HIV expected to receive £2.2m-£2.6m and someone infected with hepatitis C likely to receive between £665,000 and £810,000 in compensation.4 Exact figures for relatives of the victims were also set out, although these vary depending on whether they survived and dependent on their relationship to the victim.4

The UK government has acknowledged that ‘no measures can or will ever fully compensate for the losses and hardships suffered’, adding that ‘the government has accepted the Inquiry’s recommendation to provide financial compensation to victims of infected blood’.5

References

1. Visit: haemophilia.org.uk/public-inquiry/the-infected-blood-inquiry/the-contaminatedblood-scandal/
2. Visit: itv.com/news/2024-05-20/infected-bloodscandal-timeline-of-events-from-1950s-totoday
3. Visit: inews.co.uk/news/nhs-infectedblood-scandal-timeline-explained3064403?ico=most_popular
4. Visit: bbc.co.uk/news/health-48596605
5. Visit: gov.uk/government/publications/infectedblood-compensation-scheme-summary/infected-blood-compensation-schemesummary