A mother of three boys who were treated at Alder Hey – two of whom died after being infected with HIV – told the inquiry, ‘It was like a conveyor belt of children dying. We would constantly get phone calls from other parents telling us that another child had died.’
In one way, the boys at Treloar’s were lucky: they had each other. Across the country, in rural villages and urban towns, couples fought to keep HIV diagnoses secret as they battled intense stigma and fear.
In 1985, Clair’s husband, Bryan, was diagnosed with HIV. He was given three years to live. She was an aspiring artist and he had a zest for life that belied his haemophilia. They had met through a group of bikers and spent the early 1980s driving around in Bryan’s vintage sports car.
‘When he wasn’t in the car, he had a limp because of the wasting away of his joints and muscles,’ says Clair, now 60, who has also asked that her surname not be used. They received the devastating blow of his diagnosis just two years into married life. The nurse handed Clair a box of rubber gloves and told the young couple to ‘use a condom’.
‘We were isolated down in Devon,’ says Clair. ‘I wasn’t having “Aids” daubed on my door or my car smashed but, because that was happening to other people, it could [have happened] to us.’ They moved back to the Midlands to be closer to family, but still the circle of people they told was small. ‘Just family and one or two friends. It was the fear and hatred towards anybody with HIV.’
By 1987, she and Bryan wanted to have children and sought advice from a doctor, who told them, ‘It’s not a very good idea but if you want to go ahead, we’ll monitor you.’ Every month from September to June, they went back to the doctors for tests. Clair was negative for HIV, but she also wasn’t pregnant. Then she came down with the worst flu of her life. On the plane to California for a holiday, Bryan broke the news: her latest HIV test had come back positive. ‘It was like I was living someone else’s life and I just kept finding ways of surviving,’ she says.
Bryan started taking AZT – the vicious antiretroviral drug described as an ‘expensive poison’ in Dallas Buyers Club – and rapidly declined. As Clair sat by his side in the days before his death in March 1993, she thought to herself, ‘Who’s going to be there for me? It was frightening to think I’d die alone.’
After Bryan passed away, she maintained the secret. ‘I couldn’t tell people why he died because of the stigma. So I said he had cancer.’ To this day, she edits herself. ‘People still discriminate, they’re just quieter about it.’
On 22 June, Stephen Smith received a phone call from his new doctor. ‘I’ve got some bad news,’ said the voice. Smith had recently moved from Essex to Cornwall and was awaiting the results of a check-up. The 58-year-old had suffered from severe pains in his stomach and back for the past seven years: ‘It’s like cramp but 10 times worse. You take painkillers and it doesn’t touch the sides. You put hot water bottles on it, go in the bath. It helps if I lie on the floor.’
Smith visited top London consultants and ended up in the operating theatre. His gallbladder was removed when a doctor thought a stone could be the source of his agony, but the pain continued. He was tested for pancreatic cancer, but the results came back negative. With the chronic pain had also come a change in his personality – he was angry and depressed. Even though he’s a keen cyclist, he suffered from fatigue.