Victims’ tainted blood was ‘unknowingly’ used in research, a Coventry campaigner says

Grieving families who lost loved ones in the tainted blood scandal have claimed their relatives are being “used for research” after discovering historical notes in medical records.

Campaign group Factor 8, founded by Jason Evans from Coventry, claims that instead of stopping treatment, clinicians lobbied to continue trials, even after the association between hepatitis and treatment was identified.

It is alleged that some patients treated for the blood clotting disorder hemophilia in the 1970s and 1980s were given treatment with blood plasma that doctors knew could be contaminated and infect them with hepatitis.

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They wanted to study the links between Factor VIII hemophilia treatment and the risk of infection, but a number of families claimed that their loved ones were enrolled in these studies without their knowledge or consent.

Mr Evans, who is director of the campaign group, said he found notes alluding to the research in his father’s medical records. He says he has since found other families who have discovered the same notes in their loved ones’ records.

Mr Evans, who was just four when his father Jonathan died in 1993 after being infected with both HIV and hepatitis C during his treatment for hemophilia, told the PA news agency: “It is appalling that hundreds of people with hemophilia. across the country were knowingly infected with deadly viruses under the guise of scientific research.

“These secret experiments, conducted without consent, show that individuals were treated as mere test subjects, not human beings.

“That this could happen on such a scale, over such a long period of time, is almost incomprehensible.”

According to medical regulators, seeking consent is “fundamental in research involving humans,” but the families said neither they nor their loved ones had consented to participate in such studies.

A file of documents – obtained through freedom of information requests, medical records provided by families, peer-reviewed journal articles and documents from public inquiries into the contaminated blood scandal – reveals a timeline of the trials, led by a senior doctor who worked for The now defunct Public Health Laboratory Service.

The documents suggest patients were monitored remotely for about a decade. Hundreds of patients were involved in the studies, but it is not clear whether they gave their consent.

One of these is Janine Jones from Warwickshire. Her brother Mark Payton died when he was 41 after being co-infected with both hepatitis C and HIV.

“When I saw the research was on my brother’s records, I thought, ‘What is this?’ And after asking a few questions I got nowhere,” said the 59-year-old.

“It’s only in the last few months that it’s really come to light – they were used for research.”

Becka Pagliaro from Waterlooville, near Portsmouth, said she was “shocked” to find notes about the trials in her father’s patient notes.

Her father, Neil King, was co-infected with both HIV and hepatitis C while receiving treatment for hemophilia. He died in 1996, when he was 38 years old.

“When we got his medical records, I saw that he was part of this research, and I know it was something he wouldn’t have agreed to, so it was done covertly,” Ms. Pagliaro told the PA.

“I was really shocked – I first wondered if I had received someone else’s medical records because I couldn’t believe what I was seeing.

Emma Frame, from South Shields, said her father never agreed to take part in the studies but found several references to them in his medical records.

Ms Frame told the PA: “I have all his records, which is where I came across these studies.

“There is no information other than this doctor’s name, a treatment and then a date. With my father it was recorded several times.

“It’s absolutely amazing the information that’s out there that has been hidden.”

Jeffrey Frame was co-infected with HIV and hepatitis C and died in 1991 when he was only 39 years old.

Ms Frame said she also discovered in the mid-1990s that the NHS had kept some of her father’s “samples” which had not been discussed with the family.

“They still had actual physical samples of my father who had died years ago,” she said.

Other families have also contacted Factor 8 after finding references to the studies in their loved ones’ medical records.

It comes after it emerged experiments were carried out on schoolchildren with hemophilia without their parents’ knowledge or consent.

Hemophilia is a disorder in which a certain protein is missing that affects the blood’s ability to clot. Until the 1970s, treatment for hemophilia required plasma transfusions that had to be administered in a hospital.

This treatment was replaced by a new product called concentrated factor that could be given at home as an injection. The factor concentrate was produced by pooling human blood plasma samples and concentrating it.

But by pooling samples from up to tens of thousands of donors, the risk of contamination with viruses – including HIV and hepatitis – increased significantly.

Hepatitis C is a virus that is transmitted through blood-to-blood contact and infects the liver. Without treatment, it can cause serious liver damage. The Infected Blood Inquiry will publish its final report on May 20.

Tens of thousands of people have been infected with contaminated blood through infected blood products or blood transfusions, mostly between the 1970s and 1980s – but some cases have also been identified since the early 1990s. People were infected with hepatitis or HIV and in some cases both.

An estimated 3,000 people died as a result, while those who survived lived with lifelong health implications.

Des Collins, senior partner at Collins Solicitors, which represents 1,500 victims and their families, added: “There is now overwhelming evidence that the NHS failed patients on many levels in the 70s and 80s and certainly in ways that we find shocking and abhorrent.

“We look forward to Sir Brian Langstaff’s final inquiry report in a few weeks, which will outline the wrongdoing in a comprehensive way.

“Not only will this strengthen the case for compensation for victims and their families, but most importantly it will shine a light on the lessons that need to be learned so that the mistakes of the past are never repeated.”

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