An HIV-positive haemophiliac and his family told the tribunal of inquiry yesterday how the disease had ruined their lives and said they felt abandoned by the health service.
In emotional and at times tearful testimonies, the Co Cork family said they were angry and wanted those responsible to be named and held accountable.
The four witnesses were speaking during the second day of oral evidence at the haemophilia infection tribunal, which is inquiring into how 260 haemophiliacs became infected with HIV and hepatitis C from contaminated blood products.
The 50-year-old haemophiliac, his wife and two daughters used pseudonyms. The man, who took the name Dominic, is the first haemophiliac to give evidence to the tribunal chaired by Judge Alison Lindsay. He has HIV, hepatitis B and hepatitis C. Dominic walks with the help of crutches, and sat with his head slightly bowed as he delivered his evidence.
He said he had a severe form of the inherited blood-clotting disorder and experienced a lot of bleeding and pain as a child. During the 1980s he began using the Factor 8 product which was imported largely from the US to treat his condition.
In 1985 he was "shocked and stunned" to be told he was HIV and hepatitis B positive. He was advised to have a separate toothbrush and cutlery and to use condoms.
Dominic said he and his family did not receive counselling or support following his diagnosis with the disease known at the time as "the gay plague". He was not told about treatment options for HIV until 1996.
In 1991 Dominic inadvertently learned that he also had hepatitis C when, after a hip replacement, he was asked to pass a letter from the hospital to his physiotherapist.
He described how he and his family kept their heads down in the area where they lived and hoped people "wouldn't put two and two together". He wanted to know what had caused his infection. "Somebody did something wrong and covered it up and it caused death," he said.
Dominic took a break after he became upset while speaking about receiving compensation from the State. "There was a lot of pressure to settle earlier because many haemophiliacs were dying," he said.
Dominic's wife, using the name Anne, spoke of the strain of waiting for the results of her test for HIV infection in 1991. She had been "totally and absolutely convinced" that she had contracted the virus, but the test results proved she had not.
She was critical of the services the family had received. "Anything we have got over the last 20 years we haven't got it out of a sense of justice or right. We have got it because we had had to fight for it. We are still fighting for elements of his treatment," she said.
"Somebody should have been looking out for us but they weren't."
Dominic's eldest daughter, who took the name Barbara, broke down as she told the tribunal she may yet decide never to have children as she is a carrier of the inherited disorder which affects only males.
"I could have a son and I don't know if I could go through this again. I don't know if I could put my husband through it," she said.
She said she was devastated when she learned, at 16, that her father was HIV positive, and the illness "destroyed our family".
"I knew very little about AIDS or hepatitis and I immediately thought he was going to die within a month and there was a high chance that my mother had contracted it," she said.
She lost interest in her studies and did badly in her Leaving Cert.
"I went from being carefree and doing all the things 16-year-olds do to suddenly being afraid Dad was going to die. It was awful." The family was "abandoned, there was nothing for us. Nothing at all".
Her 17-year-old sister wept during her testimony. She described how she found out about her father's condition while rooting through letters in her parents' bedroom.
The tribunal will hear testimonies from a further 16 haemophiliacs and their relatives today and next week.