‘I had to end my pregnancy at seven months’

The infected blood scandal is the biggest in NHS history. Two survivors tell Cara Mcgoogan their story

Frankie and Joe* were children of the Thatcher era. “We were propelled by ambition,” says Frankie. They fell in love, bought their first house and married when they were still teenagers. But they were also a casualty of something that happened within that government: a failure in the Department of Health and Social Security to protect Brits from infected American blood products.

Joe is one of the estimated 1,243 people with haemophilia who contracted HIV – around half of whom have died – from medical treatment in the 1970s and 1980s. A product that was designed to help their blood clot, called Factor VIII, was made from infected plasma and gave tens of thousands of people worldwide HIV. A further 3,000 people in Britain received hepatitis C from Factor VIII. Separately, as many as 30,000 are thought to have been given hepatitis C via infected blood transfusions before 1991.

“It’s taken away my right to be a basic human being,” says Frankie, one of dozens of partners who were subsequently infected.

Frankie and Joe are sharing their story for the first time in a new series of The Telegraph’s Bed of Lies podcast. It is an in-depth look at the biggest treatment scandal in NHS history – one that has rumbled on for four decades, with few answers. In the two years since the Infected Blood Inquiry began (it’s due to report in 2022) I’ve spoken to dozens of survivors. Theirs are heartbreaking stories of loss, sickness and trauma.

Frankie left school wanting to leave behind the council estate she grew up on. And she achieved it quickly – getting her own place with Joe at 16 and riding around the Midlands in a scooter and sidecar. They even had a dog who wore goggles.

But in 1985, when Joe was 21, he collapsed while working as an engineer and was rushed to hospital where he was given a shocking diagnosis. A doctor said: “It looks like Aids kicking in.”

“That was the first time we’d ever heard of Aids,” says Frankie.

Joe had haemophilia – a genetic condition, which prevents blood from clotting properly. A new wonder treatment had come into use in the 1970s, called Factor VIII, a concentrated form of human plasma that contains clotting proteins. But unbeknown to those being treated with it, pharma companies in the US were collecting blood for Factor VIII in prisons, on Skid Row and in gay clubs. By the mid-1980s, more than a thousand people with haemophilia in the UK had also been given HIV.

With no other risk factors, it was clear that Joe – like many other haemophiliacs across the country – had been infected by his Factor VIII treatment.

Back then, an Aids diagnosis came with a terrifying prognosis – two or three years at most. The stigma was intense, so Joe and Frankie kept it secret. “We had nobody to talk to, there was no counselling,” says Joe.

It also coincided with news that should have been the happiest of their lives: Frankie was pregnant. But doctors strongly advised her to have a termination and she recalls “misinformation and duress”. She’s not the only person I’ve spoken to who was told to end a pregnancy.

“Aids meant that you were ‘dirty’, that you did things other people thought [were] inconceivable,” says Frankie.

She was seven months along, so had to be induced. Joe wasn’t allowed in the room and the medics were covered in protective gear. “It was very lonely and unhappy,” she says.

At the end of the procedure, a doctor told Frankie that: “Women like me should be sterilised,” she says, fighting back tears. “That stays with you. I felt for many years that I was a murderer.”

Frankie stopped wearing her wedding ring and withdrew from family and friends – the stigma surrounding Aids was such that she couldn’t face admitting what had happened. It was only in 2015, 30 years later, that she told her mum and brothers. “Before they thought I was wicked and horrible,” she says, because of how angry she had become as a result of the trauma. “Now they understand.”

Frankie and Joe separated in 1998. She was working multiple jobs and battling the burden of secrecy. Joe was weighed down by what he had been told was a death sentence, drinking heavily and spending hours staring blankly at the television.

“You would think going through such a horrific thing we would be crying but we were both just numb,” he says.

On the way home from a New Year’s Eve party at the dawn of 1999, Frankie threw up. She was sick over the next few months and weighed just four stone. Her dad took her to hospital and the doctor said: “Do you know anybody that could have Aids?”

“I never put the two together. I always thought I was OK,” says Frankie.

In 1991, the Government settled litigation with haemophiliacs who had been infected with HIV. It put up a £42 million ex gratia payment, which translated into £32,000 for infected people like Joe and just £2,000 for infected partners, such as Frankie. When Joe asked his solicitors what to do with the money, they replied: “Spend it, you’re going to die.”

There have been other ex gratia and support payments over the years, but no official compensation.

Joe refused to take aggressive early medications like AZT, but survived until the introduction of effective antiretrovirals, which have also helped Frankie. He’s lived long enough to want answers – and justice.

“We were an expensive and expendable patient group,” he says. “That’s how many of us see it.”

The companies that made infected Factor VIII – including Bayer, Baxter and Revlon Healthcare – as well as the politicians who allowed it to be imported and the doctors who encouraged its use are all under the spotlight in Bed of Lies.

When it comes to the pharma companies, Joe says, “I really do wish that they would hold up their hands and say, ‘This happened and we tried to cover it up.’”

And the politicians? “The bottom line is I would love a criminal prosecution out of this,” says Joe. “But I don’t ever see a politician in this country being prosecuted.” In France, three ministers were charged with manslaughter and one was found guilty. In Japan, doctors went to prison.

The inquiry is examining the circumstances in which people were given infected blood by the NHS after 1970. Criminal proceedings haven’t been ruled out once it reports and there is a paused case in the High Court for misfeasance in public office against the Department of Health, of which Kenneth Clarke was then health minister. The Government has appointed Sir Robert Francis QC to lead a separate compensation review.

For Frankie, all that is immaterial. “Compensation is not going to change a single thing in my life,” she says. “Everything I could have had is gone. The most important thing is people realise what happened behind closed doors and was hidden for so long.”

Joe is now remarried to a widow whose first husband died from Aids after being given infected blood plasma, and whom he met through his campaigning. Frankie has a long-term partner and has found solace living by the coast. She has post-traumatic stress disorder and has considered suicide in the past. “I don’t feel that way anymore,” she says. “But there’ll never be closure until the inquiry comes to an end. It’s like an open wound.”

‘The doctor said women like me should be sterilised. I felt like a murderer’

Listen to Joe and Frankie’s story on the new series of Bed of Lies, a gripping six-part podcast laying bare the infected blood scandal, on Apple Podcasts, Spotify or by searching ‘Bed of Lies’ on your preferred podcast app. New episodes will be released every Tuesday.