Last Tuesday, a few hours after Theresa May made her surprise announcement of an official investigation into the contaminated blood scandal that has seen some 2,400 people die, a text pinged in from an old boyfriend. “Well done, your work years ago has brought about an inquiry!” it read. In 1989, the year I joined The Sunday Times — and when he and I were an item — the newspaper launched a powerful campaign for compensation for the victims of what May now describes as “an appalling tragedy that should simply never have happened”.
Thousands of people, through NHS blundering or negligence — we will eventually know which — were treated with blood products contaminated with hepatitis C and HIV during the 1970s and 1980s. Haemophiliacs whose lives depended on the blood-clotting agent factor VIII were accidentally infused with HIV, which would go on to cause full-blown Aids, a death sentence, as there was then no treatment.
We now know that many thousands of others were infected with hepatitis C, a devastating virus that attacks the liver, through contaminated blood transfusions during operations or childbirth.
In 1989 the impetus seemed to be to sweep the problem under the carpet. A limited number of victims, 1,200 haemophiliacs, had been identified and given small, ex-gratia payments to keep them from suing. No proper compensation had been paid and no organisation or individual called to account. The Sunday Times thought that was a scandal and took up arms on their behalf.
I was paired up with the investigative reporter John Davison, a rugged northerner who has since become a boat-builder. We set to work, with John combing through medical research and grilling government officials, and me highlighting the horror of the victims’ plight.
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Frank Field, Labour MP for Birkenhead, was already alert to the issue and pressing for action: “Not for the first time I felt one had to go outside parliament to find a champion,” he says. “That was The Sunday Times.”
The first person I spoke to was Allen White, a 36-year-old computer systems designer whose story foretold many to come. Allen was a haemophiliac, with two young daughters, who had contracted HIV from factor VIII. Haemophiliacs lack a natural blood-clotting agent, so even slight injuries can result in serious, sometimes fatal blood loss. When factor VIII, which is derived from blood, was introduced in the 1970s, haemophiliacs were delighted because rather than endless visits to hospital, they could treat themselves at home with simple injections.
What Allen and his fellow sufferers did not know was that Britain lacked the capacity to be self-sufficient in blood products, so much of our factor VIII was imported from America. Across the Atlantic blood donations were paid for: the money attracted drug addicts and prostitutes, who were at high risk of infection from HIV and strains of hepatitis. Blood was also taken from prisoners.
“Blood was donated by prostitutes, drug addicts and prisoners
Allen was given 18 months to live when he was diagnosed with Aids, and already a year had gone by. He was suffering regular night sweats, so severe that if his wife made him a comforting cup of tea she had to hold it to his lips because his hands shook so much. “I try not to be morbid but every time I pick up a new bug I think, ‘Will this be the one?’” he told me almost 30 years ago. “Just now, I am as ill as I have ever been . . . I have to come to terms with the fact that I don’t know how long I have got.”
Allen was on my mind as I called my old boyfriend to thank him for his text. Inevitably, the conversation turned to that time, when the horror of what had happened was becoming clear. I mentioned some of the victims but he no longer recognised the names. “I just remember the funerals,” he said.
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The people John and I were writing about were dying at a rate of one a week: one for every story that ran in the paper as part of our campaign. It truly felt as if a curse had fallen on them. The suffering was worsened by the stigma attached to HIV and Aids at the time. Despite Diana, Princess of Wales shaking hands with an Aids patient in 1987 (to reassure people that the virus could not be transmitted by touch), widespread ignorance and brutality was alive and well in the late 1980s.
Last week Janet Smith, whose seven-year-old son Colin died of Aids in 1990, recalled her husband outside their house in Newport, Gwent, one night at 2am trying to clean up after someone daubed “Aids dead” on it. “We were persecuted, really, but that’s how it was in that day,” she said.
Around the same time, a four-year-old boy who had been diagnosed with HIV was refused entry to a play group.
Jane Dorey’s husband Paul had already died from Aids when we got in touch. In his final days, just before Christmas 1988, they had initially told people he had cancer. However, having joined a legal action on Paul’s behalf, Jane wanted to tell the truth: “I had to watch my husband die and I want to do anything I can to ease the pain of people who have to go through the same thing,” she said.
Doubts about blood products had been floating below the radar for years. As early as 1959, researchers were warning of a risk of passing on hepatitis through contamination. In 1974 an article in The Lancet said the rate of infection for one strain of hepatitis was 10 times higher using commercial blood. The following year the journal suggested commercially produced factor VIII should be used only in emergencies.
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By 1976, David Owen, a junior health minister, was promising Britain, which could produce only 70% of the factor VIII it needed, would become self-sufficient within “a couple of years”. Owen (now Lord Owen) later said he suspected there had been serious maladministration on the part of the Department of Health.“I saw him recently and he said it was the decision that had most haunted him, not getting our own independent supply,” says Field.
Insult was added to injury by the meagre amounts available from the Macfarlane Trust fund, set up in 1988. Small grants could be paid out for “necessities”, such as washing machines, and it paid a maximum weekly allowance of £25. Everything had to be asked for. Sue Threakall, whose husband Bob had Aids (and died in 1991) told me then she felt humiliated: “Other people might consider a dishwasher a luxury but to me it’s a necessity because it means I can have 20 minutes a day extra to spend with my husband rather than standing at the sink. Why should you have to justify to anyone that you need a washing machine or a freezer? It should be our decision.”
Though many were dying, the victims were forced to launch a legal action if they were to get proper compensation. Rosemary Collins, our news editor, was from New Zealand, where a no-fault compensation system was in place to assist victims of medical and other accidents, without them having to prove negligence. Her conviction that the government had not just a legal but a moral duty to support the victims became a key theme of the campaign.
Within weeks of our launch, Field had galvanised 200 MPs to write to The Sunday Times in support. Many also wrote to Kenneth Clarke, the secretary of state for health. Clarke’s view was that the haemophiliacs had insufficient evidence to win a case in court, but as the weeks wore on, the adverse publicity began to rattle the prime minister, Margaret Thatcher.
She agreed to meet a group of senior Conservatives who were lobbying on behalf of infected constituents. Speaking on the subject in the Commons in November 1989, Patrick Cormack, MP for South Staffordshire (who now sits in the Lords), said: “The campaign will go on and we shall not go away. The Sunday Times will continue its thundering and we shall continue our thundering.”
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A few days later, Clarke announced a £19m top-up to the Macfarlane Trust, intended to provide a grant of £20,000 to each victim or family. It was a significant, but partial victory. In fact the cost of the grants would be £24m, so the £5m shortfall had to be found from the trust’s existing funds, which were earmarked for other things.
“It would be churlish to argue that £19m is unwelcome . . . [but] the quality of the government’s mercy is so strained as to be morally reprehensible,” The Sunday Times declared. “It is a further example of the cynicism and lack of principle that has pervaded this tragic affair.”
It would take another year of heartrending stories and painstaking piecing together of who-knew-what-when, plus the intervention of the High Court judge overseeing the case of several patients who were demanding compensation from the government, to get a satisfactory outcome. In November 1990 we obtained a letter sent by Mr Justice Ognall, urging lawyers on both sides to give “anxious consideration” to settling the issue. In essence, the government should pay up before the claimants died.
Around the same time, Thatcher was ousted. We were told privately that the new prime minister, John Major, was keen to get the issue off the table. Clarke was replaced as health secretary by the more emollient William Waldegrave and, shortly afterwards, the government agreed an out-of-court settlement of £42m.
In the summer of 1990, John and I were commended in the British Press Awards as campaigning journalists of the year for our work on the tainted blood scandal. But it seemed the issue would literally die away as the haemophiliacs succumbed. We could not have imagined that contaminated blood would be at the top of the political agenda 27 years later, nor that hepatitis C would take over from HIV as the principal infection.
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Some 7,000 people are estimated to have hepatitis C now, but no one really knows the number because symptoms often do not appear for 20 or 30 years and are sometimes ascribed to other ailments. Anita Roddick, the founder of the Body Shop, died in 2007 after contracting hepatitis C from a 1971 transfusion.
Just as with the settlement in 1990, an element of political instability has led to the current inquiry. Diana Johnson, Labour MP for Kingston upon Hull North, has been campaigning on the issue since she met Glenn Wilkinson, one of her constituents, in 2010. Wilkinson, 52, a former engineer, is a mild haemophiliac who was given factor VIII in 1983 to prevent excessive bleeding when he had a tooth removed in hospital.
He discovered he was infected with hepatitis C in 1995, when it showed up on blood tests for an unrelated illness. “The hospital rang and said the doctor wanted to talk to me so I popped in one lunchtime,” he says. “I’d never heard of hepatitis C. I was told it would attack my liver, causing cirrhosis and maybe cancer and that I might need a transplant. I was devastated, frightened.”
Johnson was horrified by Wilkinson’s story. “Then I discovered that thousands of people had been infected and died and that this hadn’t ever been properly investigated.” She has been chipping away at it ever since.
In 2015, following the Penrose report into contaminated blood products in Scotland (which many victims denounced as a whitewash), David Cameron apologised to those who were infected by HIV and hepatitis C. In April, as he left the Commons, the former health secretary Andy Burnham declared there had been a “criminal cover-up on an industrial scale in the NHS” over contaminated blood and called for a Hillsborough-style inquiry.
As Theresa May had set up the Hillsborough inquiry when she was home secretary, Johnson was hopeful she would do the same as prime minister for contaminated blood. May refused. Johnson requested an urgent Commons debate, which was due to be held on Tuesday. She then had an inspired idea: getting all six leaders of the opposition parties — including the DUP — to sign a letter to May asking for an inquiry. Given the post-election parliamentary arithmetic, the government was bound to take notice, but even Johnson was not optimistic.
“I’d written my speech on the basis they were going to refuse again then I got a message to say the government was about to cave in. You could have knocked me over with a feather,” she says.
Now the question is what kind of inquiry this will be: will it have teeth, be able to compel witnesses and demand documentary evidence? If it does, one generation later, we may all learn the truth about what happened.