Patients ask why they were infected with HIV and Hepatitis C 40 years ago – and were not told they were part of a test

Patients infected with a deadly disease 40 years ago – and the families left behind when most died – hope an inquiry into how it happened will finally reveal the truth.

Thousands of haemophiliacs were given infected blood by medics in the 1970s and 80s – but were not told, some for decades.

Of about 1,250 haemophiliacs infected, according to the campaign group Tainted Blood, as few as 200 are still alive.

They were given Factor VIII (F8) blood product, mostly from the USA, until the mid 1980s.

It was a supposed “miracle drug”, designed to help their blood clot but instead some blood products were contaminated with Hepatitis C and HIV.

A doctor who worked at St. George’s Hospital, Tooting, and later became a consultant at St Thomas’ Hospital, Waterloo, this week agreed patients should have been informed about the dangers.

Some doses had come from prison inmates and drug addicts – high-risk groups for viruses like HIV and hepatitis C. Some came from central American villagers who, it subsequently transpired, had been forced to donate blood at gunpoint by criminal gangs.

There were warnings repeatedly from 1974, but F8 was not withdrawn until 1986. It has been called the biggest scandal in NHS history.

Dr David Bevan, a senior registrar at St George’s Hospital in Tooting from 1979-84 and senior consultant from 1984-2004 in haematology gave evidence to the Infected Blood Inquiry on Tuesday [12 January.

He described it as “the most terrifying phase of my professional life”. He said there was a feeling that HIV was “running out of control”. He added it was “unarguable” that by 1979 patients should have been informed about the known hepatitis risks from blood products. “We knew it by then – they should have been told about the risks,” said Dr Bevan, who also worked at St James Hospital, in Balham, now demolished. “I remember describing those exposed as like a canary in a coalmine.

“To continue to propose there was no conclusive evidence that Aids was caused by an infectious agent – it was untenable. The doctors were admirable but they held the line into 1983 – by which time it had become denial.”

Haemophiliac Steve Dymond, a former teacher at Catford County School from Streatham, probably infected by F8 in the 1970s, died a year ago. His wife, leading campaigner Sue Gorman (pictured with him, above), a former teacher from Catford, was only kept solvent by gofundme donations after his death. She said outside the hearing: “For so many years, people said this is so awful, it could not be true.

“I asked Steve before he died what he wanted from the inquiry. He said: ‘an expression of sincere contrition from those ultimately held responsible.’

“We want to know why St George’s started with F8 later than other centres – why did their views not impact the rest of the country? It was not necessary to rush to new treatments like F8.”

One victim, Luke O’Shea Phillips, from Honor Oak Park, infected with Hepatitis C as a toddler, said outside the hearing: “I don’t want sorry – I just want them to admit what they were up to.

“The truth would set so many people free because it would take away so much pain. There have been dark periods when I could have lost it all and blamed this.”

He was not told for four years he had been infected through F8 with hepatitis C. His mother was not told he was in a medical trial, the infected blood inquiry heard.

A letter saying he was suitable for the trial was copied to a pharmaceutical firm, Alpha Therapeutics. A hospital letter in January 1997 told his mother she was “aware” he had Hepatitis C – though she said she had never been told any such thing.

“I felt like a walking infection machine,” he said. “I had a sense of hopelessness because there was no treatment at that stage,There was so much evidence we were used in tests.”

Another haemophiliac from Brockley Park, Brockley, Matthew Merry was eight years old in 1986 when he was told by his mum he had been infected with HIV four years before. When the infection started to show, he would probably have two years to live, doctors told him.

His parents told him not to tell anyone – other patients had had “Aids scum” daubed on their homes. He said this week: “It was so upsetting at the time I didn’t want to talk about it, because I knew I’d just break down in tears, so I just shut it away.”

He went off the rails in his teens but then was cured of the Hepatitis C after 12 agonising months of interferon.

He now has two sons, after his sperm was treated so that his wife was not infected. They are now approaching the age he was when he was told. “I don’t feel as if it was done to me – it’s as if it was done to my kids,” he said.

The inquiry, at Fleetbank House near Fleet Street, is expected to last another two years. The UK government has apologised to victims.

No fault has ever been admitted by the pharmaceutical companies which supplied the contaminated blood products.