Infected blood victims were used for research without consent, families claim

Infected blood victims were experimented on and used for research without their consent, families have said.

Doctors at NHS haemophilia centres around the UK were using patients to determine if there was a risk that some blood products were giving people hepatitis, they claim.

The infected blood scandal of the 1970s and 80s saw more than 2,500 people become infected with hepatitis C and around 1,250 with HIV from contaminated blood products made and imported from the US, including Factor VIII.

The drugs were hailed as miracle treatments for people with the genetic blood-clotting disorder allowing them to live normal lives.

However, the donors in the US were often gay men, sex workers, prisoners and homeless people who had high rates of infection that went into the blood products and subsequently infected patients in Britain.

Documents unearthed by campaign group Factor VIII, as well as files submitted to the Infected Blood Inquiry have unearthed a long-running project to run research projects on haemophiliacs.

Victims say that doctors ran experiments to determine the risk of infection from imported Factor VIII and continued to run these studies even when aware of the links to heightened infection risk.

Jason Evans, the director of the campaign group, found notes alluding to the research in his father’s medical records, where the Factor VIII prescription was accompanied with a scribble that said “Dr Craske’s Research Work”.

Mr Evans’ father died in 1993 after being infected with both HIV and hepatitis C during the course of his treatment for haemophilia.

John Craske was the head virologist at the Public Health Laboratory Service (PHLS) during the scandal and published research on the risk of hepatitis from Factor VIII.

At a meeting of leading haemophilia doctors in 1974, he started a project to study rates of hepatitis at different haemophilia centres across the UK and what drug was causing it. In 1975, this was expanded to include hepatitis B.

The hepatitis experiments lasted into the early 1980s when the scandal escalated further with the emergence of HIV.

Around 1,250 haemophiliacs would go on to contract HIV from Factor VIII.

Mr Evans said: “It is appalling that hundreds of people with haemophilia across the country were knowingly infected with lethal viruses under the guise of scientific research.

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

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

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 infected with both HIV and hepatitis C while receiving treatment for haemophilia.

He died in 1996 when he was 38 years old.

“When I got his medical records I saw he was part of this research which I know was something that he would not have agreed to, so that was done covertly,” Ms Pagliaro said.

“I was really shocked – I wondered first of all whether I had received someone else’s medical records because I could not believe what I was seeing.”

Emma Frame, from South Shields, said that her father had never agreed to be part of studies but found multiple references to them in his medical records.

“I have all of his records which is where I came across these studies,” she said. “There is no information other than this doctor’s name, a treatment and then a date. With my dad it was recorded several different times.

“It’s absolutely mind-blowing the information that is out there that has been hidden.”

Jeffrey Frame was infected with HIV and hepatitis C and died in 1991 when he was just 39.

Ms Frame said that in the mid 1990s she also discovered 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 dad who had died years previous,” she said.

Other families have also contacted Factor VIII after finding reference to the trials in their loved ones’ medical records.

It comes after it emerged that experiments were conducted on haemophiliac schoolboys at Treloar’s school for disabled children in Hampshire without the knowledge or consent of their parents.

The Infected Blood Inquiry will publish its final report on May 20.