‘True culpability has been obscured’ in the infected blood scandal

The inquiry into the biggest treatment disaster in NHS history has revealed shocking cover-ups and delays by the UK government. But the role of pharmaceutical companies—with whom this all began—should not be forgotten

May 20, 2024
Infected blood victims and campaigners protest on College Green in Westminster, London. They carry placards which read "Dying for justice" and "Justice delayed is justice denied".
Infected blood victims and campaigners protested on College Green in Westminster in February 2024. They will return to Westminster on Monday to hear the inquiry’s conclusions. Photo: PA Images / Alamy Stock Photo

Thousands of people are expected to gather at Central Hall in Westminster today to hear how they and their loved ones came to contract lethal viruses in the biggest treatment disaster in NHS history. After waiting more than 40 years for this moment, they are expecting a damning indictment of politicians, health officials and doctors. They hope an apology from Rishi Sunak and life-changing compensation will follow. At long last, the Infected Blood Inquiry will reveal the mistakes from the 1970s and 80s that led to almost 3,000 people dying from HIV and hepatitis after receiving contaminated blood products and transfusions. As this historic moment arrives it is vital to reflect on how the UK could have more effectively responded to the scandal—and what we could yet learn from other countries.

For the past five years, I have followed the twists and turns of the Inquiry, first for my podcast Bed of Lies and then my book The Poison Line: Life and Death in the Infected Blood Scandal. As inquiry chair Sir Brian Langstaff focussed on the UK, given his statutory remit to investigate events here, I started tracing Factor VIII, a blood clotting treatment for haemophilia, back to its source. I spoke to lawyers and whistleblowers in pharmaceutical companies in the United States, interviewed a doctor who was sent to jail in France and combed through the findings of a forensic inquiry in Canada. I was struck by how piecemeal justice has been, with governments drip-feeding compensation and pharmaceutical companies continuing to profit as their customers died. For years, the powerful hoped “the problem” would simply go away. 

Factor VIII was billed as a “wonder drug” when it was approved for use in the UK in 1973. Made from human plasma, it contains the protein factor VIII, which people with the genetic bleeding disorder haemophilia A need to form blood clots. The treatment was a white powder, kept in the fridge, which people could mix with sterile water and inject themselves. In the early days, it proved a revelation. It allowed people with haemophilia to live more normal lives and prevented debilitating internal bleeds. 

Only a single donor needed to have an infection to contaminate the whole batch

But there was a shortfall of Factor VIII in the UK. Strict rules on plasma donation meant we didn’t collect enough to fulfil our population’s Factor VIII needs. Here, paying donors is illegal and people could only give plasma twice a month. But in the US, donors earned money for donating plasma, which they could do twice a week. A multi-billion-dollar industry was born in America, which supplied much of the world’s Factor VIII demands. 

Pharmaceutical companies (Baxter, Bayer and Alpha) collected plasma from donors who were at a higher risk of blood-borne viruses—including in prisons, impoverished areas of cities, and outside gay nightclubs. They then pooled tens of thousands of donations (as did another company, Armour); only a single donor needed to have an infection to contaminate the whole batch.

This Factor VIII was pumped from the US around the globe, infecting people who used it indiscriminately with HIV and hepatitis, among other blood-borne viruses. Over a decade, the global haemophilia population was decimated. In Germany, almost 3,000 people contracted HIV from 1979 to 1985 from infected Factor VIII; by 2020, just 343 survived. In the US, where an estimated 8,000 people were infected, 719 are still alive. And in the UK, of the 1,250 people who contracted HIV, there are 258 survivors. 

No two countries responded to the crisis in the same way. Some governments were upfront about the disaster, launching investigations and compensating victims immediately. Others left it to survivors to fight lengthy court battles and wage public campaigns before addressing the injustice.

Two countries handled the disaster thoroughly and effectively: Germany and Canada. In Germany, pharmaceutical liability laws meant patients didn’t need to prove companies had been negligent in order to receive compensation, just that Factor VIII had harmed them. By 1988 companies had paid DM100m (around £30m) to German victims. Six years later, a government investigation found all parties had failed to safeguard the blood supply and announced a further DM240m (£107m) in compensation. Pharmaceutical companies who made Factor VIII there—Bayer, Baxter, Armour, Alpha, Immuno and Behringwerke—were forced to contribute around 40 per cent of the money. 

In its report, the German government found the risk of Aids had been clear from 1983 and the country should have switched to a safer version of Factor VIII, which had been heated to kill viruses. The UK continued to use the unsafe version well into 1985. 

Canada also held a sweeping inquiry in the 1990s, which led to compensation for all victims “without delay” and an overhaul of its blood system. Justice Horace Krever, who chaired the inquiry, said the government and health officials had rejected “an important tenet in the philosophy of public health”. “Action to reduce risk should not await scientific certainty,” he said.  

The UK’s closest neighbour, Ireland, held a similar inquiry. In France, two doctors were imprisoned for their role in the Factor VIII scandal and two health officials were found guilty and given suspended sentences. And in Japan, three executives were found guilty of negligence. Victims there were given $430,000 (around £280,000) in compensation in 1996, 56 per cent of which was paid by pharma companies.

The UK government has been dragged kicking and screaming into reckoning with its past failures

All this adds to the undeniable picture of shocking cover-up and absurd delay survivors and bereaved relatives have been subject to in the UK. There is evidence of Department of Health documents being destroyed and new health ministers being presented with false information by civil servants. We have held two inquiries—the Archer and Penrose inquiries—before the current Infected Blood Inquiry, but neither had powers to compel government witnesses nor enforce recommendations. The UK government has been dragged kicking and screaming into reckoning with its past failures.

As the UK confronts more than half a century of mistakes, it is vital we keep an eye on the international picture. Letting each country treat this as a national problem—focussing on the mistakes made by their own citizens—means that the true culpability has effectively been obscured. Those pharmaceutical companies that knowingly sold infected Factor VIII have only faced justice where there have been successful lawsuitsI have tried to rectify this by telling their story, and the story of the lawyers who fought them for over a decade, in The Poison Line. This is a tale about the dark side of capitalism; how putting profit above safety set off a chain of consequences we are only now fully understanding.

There are yet lessons the UK can learn from other countries. It is unlikely we will see convictions out of today’s report; too much time has passed and many of those most culpable have passed away. But when the government announces its long-awaited final compensation deal, it could be wise for it to consider how to recoup some of the money from pharmaceutical companies, given it will no doubt run to billions of pounds. And rightly so, given the catastrophic hurt caused. 

To give Sir Brian the last word, as he said in his interim report last year: “Wrongs were done at individual, collective and systemic levels…. Not only do the infections themselves and their consequences merit compensation, but so, too, do the wrongs done by authority, whose response served to compound people’s suffering.”