People who caught HIV through blood transfusions share their stories

9:20am Monday 10th December 2007

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Dozens of people who caught HIV through blood transfusions have shared their stories for the first time.

In the Eighties 1,200 people with bleeding disorders such as haemophilia were infected with HIV. Only 360 are alive today.

Thirty survivors aged from 26 to over 70 have been interviewed for an oral history project, along with 36 relatives and friends of those who contracted HIV.

The project was led by Robert James, chairman of the Birchgrove Group, a national body for haemophiliacs with HIV, and Sian Edwards a nursing tutor from Brighton University who has since moved to Australia.

Mr James, 41, from Hanover, Brighton, said: "I want people to understand a piece of important history and how extraordinary the experiences of haemophiliacs and their families have been in terms of life and death and the enduring secrecy of so many families.

"Myself and Sian were scared this piece of history would be lost."

The recordings for the Haemophilia and HIV Life History Project and HIV in the Family will be stored by the British Library. Funding came from The Heritage Lottery Fund and the University of Brighton and the projects were supported by The Haemophilia Society and the Macfarlane Trust.

All interviewees were infected with HIV about 23 years ago receiving concentrated blood products made from thousands of donors.

They were asked about the trauma of finding out that they were HIV positive at a time when Aids was portrayed in terms of fear and panic. One of the five interviewees from Sussex has since died.

Mr James, who was diagnosed in 1985 at the age of 18, said: "Stigma was tied to the condition, particularly during the Eighties. There was fear of dying and then adjusting to not dying. For the families where someone died, there was that continuing feeling of having to keep it a secret and not telling anyone what happened to their son, or brother.

"Haemophilia is a genetic condition, it runs in families, and there were lots of people who saw their brother or someone die of what might kill them."

Mr James said after his diagnosis he buried himself in his studies and got into university in Swansea, where he got involved in the Birchgrove Group and started campaigning for compensation.

After a drawn-out legal battle during which many claimants died, the Government settled out of court with payments ranging from £15,000 to £60,000 depending on age and marital status.

An independent inquiry is now examining the case.

Over the last ten years with advances in treatment, people are living longer.

Mr James said since 2000 three or four of his close friends have died. Before that, it was three or four every year from 1985.

He said: "My life is actually really good at the moment, partly because I am feeling confident I am not going to die in the next three years."

To hear extracts of the stories of survival and loss, visit www.livingstories.org.uk or hear the complete interviews through the British Library Listening and Viewing Service in London.

Chris James, chief executive of the Haemophilia Society, said: "No-one can read or listen to these accounts without being overwhelmed by the extent of this disaster of the courage of those who have survived it."

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