Victims infected with Hepatitis C and HIV speak of trauma

After the government’s Infected Blood Inquiry looked at the delayed use of F8 at St George’s Hospital, Tooting, Toby Porter talks to South London victims about their trauma.

Haemophiliacs already have a tough time. But in the 1970s and 1980s, thousands were infected with Hepatitis C and HIV after they were given blood product Factor VIII (F8) – some of it had come from prisoners and Central American villagers forced to donate at gunppoint.

Matthew Merry, from Brockley, was infected with HIV as an eight-year-old.

His mother found out from another haemophiliac’s mother they bumped into at a railway station.

“It makes me so angry we were forgotten,” he said. “We were told to go away – and were expected to die.

“They knew the F8 given to us was likely to be infected.

“There were no warnings. Only about 200 of the 1,250 Haemophiliacs infected with HIV and Hep C are still alive. All for what? It’s the equivalent of playing Russian Roulette with only one empty chamber.

“When mum told me, I really don’t think it went in.

“But I did cry later, because I knew HIV was a death sentence. I failed A levels, smoked cannabis, went to raves, trying to squeeze as much out of my short time as possible.

“I knew having children would be impossible – it would be hard to have a girlfriend and a normal life.

“I was in a dark place. But I have turned it around. I feel incredibly lucky to have stayed healthy. I have two boys.

“We want to know who knew HIV and Hep C was coming into the country and what they did and did not do about it – and what the government knew. So it does not happen again. There has been a big cover-up – and that means nothing has been learned. There is no shadow of doubt in my mind they knew a lot more than they told us.

“And the poor ex-gratia payment offered in the early 1990s – everyone was coerced into agreeing to it. They were told if they did not agree, no one would get it.

“I don’t think anyone will be prosecuted. But that is not the crucial thing. We need the lies to be exposed.”

 

Steve Dymond, from Catford, was first infected with hepatitis C, it is now believed, while a student of Russian at Exeter University in 1976 – where he met Su Gorman and fell in love.

Su said: “It would be 21 years before we discovered all the plans and hopes and dreams we shared in those sunny days were already badly compromised.”

The former Catford County School teacher was first infected in 1976. He was exposed to HIV in 1985 through a product which should have been withdrawn from use many months earlier. It led to 18 months of trauma but, mercifully, he escaped.

Despite having an MA in business studies, a PhD in cultural and artistic management – both studied in French – from the age of 46 he never worked again. The vicious anti-viral treatment, which failed to eradicate the hep C in 2003, did so much damage. Su said: “Steve once described living with the condition as akin to going through life with your shoe laces tied together or having the permanent sensation that everything he aimed for was just out of his reach.”

In 2015, the year the new drug treatments finally cleared the hep C from his body, too late for the ravages to be repaired, he began to campaign on behalf of haemophilia families. But he died in hospital in 2018.

“It wasn’t supposed to be like that,” added Su. “We still had plans to retire once the battle for truth and justice was over.

“His last words were to insist that those responsible for this harm to so many should be made to do penance. I promised him it would happen. That is one promise I intend to keep.

“It is not the legacy we imagined. There are no children, no shared home, no financial security and no life insurance.

“But none of that has anything to do with me not knowing what I’m going to do without him.”

Luke O’Shea Phillips, a photographer from Crofton Park, was infected in 1984 aged just three years old – the first time he received any haemophilia treatment – but not told until 1997.

“Mothers were taking toddlers like me into hospital and we were coming out with fatal conditions,” he said.

For a long period, after instructions from medics, his mother injected him with F8 – putting her and his siblings in extreme danger.

A letter saying he had been given F8 and should be considered part of a trial was copied to an American company. He was tested for hepatitis C without being told.

His mother got a letter in 1997 saying he had an appointment for his hepatitis C. “That was the first time we had any indication I had been infected,” said Luke.

“I have worked hard to ensure the hell I went through did not destroy me.

“Steve was a god to me. He helped me, loved me, hugged me and showed me a path away from self-destruction. I love that man. I miss him – I have a garden for him. He is the hero of the story.”

Luke has had close shaves with his haemophilia – at one stage nearly being disabled by a single bleed.

He said: “I would give all the money in the world to know no other toddler will be put into that situation ever again.”