Tainted blood scandal: family speaks out over death of father
Devoted dad John Cowen placed his faith in a so-called wonder drug, only to find out years later that it was contaminated with HIV.
Born a haemophiliac, he was one of thousands who became infected - and later lost their lives - as part of the high-profile tainted blood scandal.
He was cruelly taken from his family in 1991, aged just 36, after it developed into AIDS - meaning he never got to meet his grandchildren
Now, 26 years after his death, his family are speaking publicly for the first time as they join the fight to get justice for victims.
Widow Doreen Cowen and daughter Nina Douglas are demanding an independent public inquiry to find out exactly how and why John, and many others like him, contracted HIV and hepatitis C from blood products.
John was born with the rare genetic disorder haemophilia, which impacts the body’s ability to clot. It means that if the person is cut or bruised, even on a minor level, the bleeding continues for much longer periods.
As a severe haemophiliac, even a tiny cut was a major issue for John. But his saving grace - or so he thought - was a product called Factor 8.
In the 1970s and 1980s, this revolutionary new clotting agent was made using proteins obtained by pooling human blood. But it later emerged that some of the blood being used had been contaminated with HIV and hepatitis C.
Doreen still remembers vividly the way they found out, at a public meeting in Newcastle - when she said their happy life shattered into pieces.
John met Doreen when she was working at the Central Hotel, in Carlisle, where she had a part time job while studying. They married soon after and went on to have two children, Nina, now 44, and younger brother Ben Cowen, 35.
Because of his condition, John, who worked as a milkman and at Cumbrian Newspapers, had to be extra careful with everything he did.
“Just a little bang could cause internal bleeding. It was really serious. He was in hospital quite a lot when I was younger, sometimes months on end,” said Nina.
“I always remember him using the Factor 8. If he ever hurt himself that’s what he would immediately go and do. He could self inject.”
Doreen added: “It was a marvellous thing. It meant he could live a normal life. It meant he could play golf, which he loved.”
Every time he used the drug he had to keep a record of it, and these were presented to the hospital in Newcastle at each check up.
Then came the tragic news.
“We got a letter to say we had to go to a meeting in Newcastle and take any Factor 8 we had with us, and the records,” said Doreen.
“It was 1984. There were numerous families in this meeting. Some of them were children. There was someone on a microphone, and they told us all at the same time. It was just awful. I’ve never seen anything so heartbreaking.”
Doreen remembers how John felt after he heard the news. “He was worried about how I’d manage on my own, and about the children.
“It was a strange thing. He said the Factor 8 gave him his life. Without it he couldn’t have had family. He said it gave him everything he could have wanted, but then it also took it all away,” she said.
At that meeting they were only told about the HIV. It was only six years ago that Doreen found out he’d also been infected with hepatitis C.
“This man just knocked on my door. It was so businesslike. He just gave me a form and said I had to fill it in because there was a chance John had hepatitis C as well. The information came back and confirmed it.”
To date the family have never spoken publicly about his illness. At the time HIV was a taboo subject. Even Nina didn’t know her dad had it until years later.
“I thought he had cancer. I just presumed. Nobody talked about AIDS,” she said.
Gradually John’s HIV progressed and developed into AIDS.
By 1990 he was incredibly frail, and worsening. But he was determined to take his family to Portugal, to show them one of his favourite golfing haunts.
It would be their last holiday together, before he died in May 1991.
The family have now decided to speak publicly as part of a growing national campaign for answers, backed by former MP Andy Burnham - who used his final speech in Parliament to label it a “criminal cover-up on an industrial scale”.
John’s family say that the problems arose when the the NHS started to import supplies of factor concentrates, including Factor 8, from the US. It has been widely reported that these used blood from high-paid donors and also from prisons.
Nina said: “It was fine when it was made here, but then there was a strike at the factory and they started to import. That’s when it went wrong.”
The family want to see a full public inquiry, with statutory powers to compel witnesses to give evidence under oath and to get documents released.
They say previous investigations have missed crucial detail because people declined to attend or key information was not available.
Although Prime Minister Theresa May has, in recent weeks, agreed to hold an inquiry, campaign groups have expressed serious concerns that the Department of Health will be involved in setting up and managing it.
Nina, who has now written to Carlisle MP John Stevenson twice about the matter, does not believe this should ever be allowed.
“One MP has compared it to asking South Yorkshire Police to lead an inquiry into Hillsborough. That’s exactly how it feels,” she said.
National campaign groups last week jointly rejected an invitation to attend a consultation meeting with the Department of Health.
A statement from the TaintedBlood campaign said: “Such a meeting is entirely inappropriate since the Department of Health will be the main defendant, both at the inquiry and future proposed court proceedings.”
Doreen said the victims and their families deserve justice.
“People thought it was a wonder drug, which it was. It should have stayed that way, but it didn’t. Why did it happen? We still don’t really know. They must have known the type of people they were buying blood from,” she said.
“I think we just feel we have to talk about it now. After all these years there are still too many unanswered questions and nobody has ever been held to account.”
Nina added: “If you think about it, 2,400 people have died. That’s huge. If all those people had died in one day there would be an uproar and full inquiry. Look at Grenfell.
"But because this has happened over years and a lot of people have never really talked about it, nothing has happened. That has to change.
“My dad should still be here. He has three grandchildren and a great grandchild who he never got to meet.”