‘We were told to keep it quiet,' woman with HIV tells blood inquiry

Victim of contaminated blood says she was treated as if she were a drug user or prostitute

A woman who contracted HIV from her husband after he received contaminated blood has spoken about how she became infected as they tried to have a baby.

Giving evidence to the infected blood inquiry in London, Clair Walton, 57, said she felt “terrified and traumatised” when her husband Bryan, a haemophiliac, was first told he had tested positive for the virus.

The couple met in Leamington Spa when she was 17 and became engaged on her 21st birthday. They were part of the “bikers’ scene”, she said, and “scrimped and saved” to buy their own home. They married in May 1983.

Clair had qualified as an archive conservator; he managed petrol stations. As a haemophiliac, Bryan had been given Factor VIII products to help his blood to clot. “In early 1985,” she said, “he was called into the hospital. We thought it was for a regular test but he was told he was positive … with HIV and would die in a few years.

“It was a strange meeting. The nurse handed me a box of rubber gloves to protect myself. We were advised that if we wanted to have sex we should use condoms and they left us to go home and work it out for ourselves.”

Clair suspected her husband had been tested before and not told about his infectious condition. The inquiry was shown his medical records confirming that he had first proved positive in June the previous year.

At the time the media was full of “incredibly frightening” reports about Aids, she explained. “We knew the best thing was to keep quiet. People were losing their jobs. Some had “Aids scum” daubed on their homes.

The couple decided they wanted to try for children. This was before the medical technology was available to ensure a safe pregnancy. “We went to the unit at the hospital in Coventry and had a conversation with the director,” she recalled. “We said we would like to have a baby and he said, ‘That’s not a very good idea but if you want to we will monitor you’.

“They were watching whether I would turn from HIV negative to HIV positive. There wasn’t any advice around. It seems incredibly innocent and naive at the time.” She said she felt as if they were being monitored for research purposes.

In June 1987, Clair had medical tests after falling ill. She was told the result was inconclusive and had to be tested again. The second result showed she was positive but she was not informed directly. Instead, the doctors told her husband. He passed on the news later when they were going on holiday, flying across the Atlantic.

Claire outside the NHS blood inquiry at the Church house, Westminster
Claire outside the NHS blood inquiry at the Church house, Westminster. Photograph: Alecsandra Raluca Drăgoi/The Guardian

Clair went on to work at the Shakespeare Birthplace Trust in Stratford upon Avon and nursed Bryan as his health deteriorated. They went on a road trip together to Iceland shortly before he died. “I was a young woman and I was watching my husband become more and more emaciated,” she said.

There was a moment, she remembered, when they hugged in their kitchen. “He was worried about me. He said, ‘I don’t want to die: ‘I’m too young. There’s too much I want to do.’ He was 34. Then he said he was worried about me.

“I said, ‘It’s OK. I will be all right. He died within a week. It was as though he needed permission to die.” Bryan Walton died in hospital in March 1993 with his parents holding his hand.

Clair explained to most of her friends and work colleagues that he had died of cancer. “There was such stigma at the time,” she said. Her health then began to decline and she had to give up a conservation course at the Victoria Albert Museum in London. “I was the walking dead and became more and more ill.”

Having avoided anti-retroviral drugs to combat HIV infection – because she had remained largely healthy – she was taken into the Royal Free hospital and Mildmay hospital in east London. “As a white woman,” she said, “It was assumed that I was a drug user or a prostitute. I didn’t feel that I should have to explain who I was.”

At one stage, her weight fell to as low as six stone but she gradually recovered with the help of the drugs. For many years, she said, she had led a double life – “we were told to keep it quiet” – but “as the years have gone by, partly through this inquiry”, her attitude had changed.

“I felt that HIV voices were not being heard and I started to speak to newspapers and to realise that the world has changed slightly. If I deal with someone [now] and they reject me then that’s their problem.”

Clair also told the inquiry about problems she had with the McFarlane Trust, a government-backed charity that was supposed to help haemophiliacs who had contracted HIV and their families.

“They seemed to forget that they were dealing with desperate and dying people. It was as though we were not entitled to an apology. It was as if we were dirt. It wasn’t language that you would have thought appropriate for an organisation that was supposed to support you.

“They were expecting us to die,” Clair said. Loans she received were secured against her property. She felt they had been forced to sign over their home to the trust under duress. There was, she added, “contempt” for clients.

In one letter she wrote to the trust, which was shown to the inquiry, she wrote: “HIV and [my husband’s] death put a stop to us having children and now I face this world alone.” This week, after years of financial disputes, she was informed by the Terrence Higgins Trust that the loan on her property has eventually been written off.


Owen Bowcott Legal affairs correspondent

The GuardianTramp

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